D. Kakovost predlaganega programa CO (največ 16 strani + obrazci) Navodilo: (SLO, ANG) Predstavite raziskovalni program CO, prioritetna področja, temeljne pristope in hipoteze, vključno z načrtom dela posameznih skupin znotraj CO, za celotno obdobje trajanja, pri čemer kar se da podrobno opredelite delo v prvih dveh letih. Opredelite nosilne raziskovalce posameznega delovnega sklopa in njihove obremenitve v okviru CO (obrazec 1.1). Pripravite finančno konstrukcijo CO, plan finančnih investicij in načrt realizacije sredstev za obdobje 2009-2013. Posebno pozornost namenite sledečim segmentom:

D.1 (SLO, ANG) Vsebina programa CO (teoretična izhodišča, temeljni pristopi in hipoteze, glavne smernice dela…);

1. Izhodišča

Razvoj informacijske tehnologije in telekomunikacij je dosegel tisto stopnjo, ko je smiselno dograditi aplikativno uporabnost za potrebe zdravja. Pojem zdravja predstavlja širok koncept in vključuje veliko strokovnjakov različnih strok. Nenazadnje je še posebnega pomena preventiva in predvsem aktivno sodelovanje uporabnika zdravstvenih storitev, njegova posebna motiviranost za preprečevanje nastajanja in odpravo motenj ali bolezni. Prednost telemedicinske aplikacije v zdravstvu je v preglednosti, hitri in natančni izmenjavi podatkov, kar omogoča efektivnejšo, predvsem pa pacientu prijaznejšo obliko pomoči. Med najpomembnejšimi dejavniki je reorganiziranost zdravstvenega sistema, ki bo tako postal bistveno bolj dostopen, cenejši, pravičnejši, bolj selektiven, natančen, popoln, pregleden, manj zmotljiv in izjemno bolj prijazen.

V R Sloveniji je sodelovanje med zdravstvom in tehniko tradicionalno sicer dobro, zagotovo pa bi bilo lahko tudi boljše. Telemedicina (TM), ki je preplet inovativnosti in tehnološkega napredka, predstavlja osrednjo in trenutno izjemno pomembno pozicijo v smislu nezamenljivega pristopa za vzdrževanje zdravja.

Iz imena TM je razvidna prepoznavnost dveh obsežnih strokovnih sistemov in njuna povezanost. Ne le zaradi pomembnosti prisotnosti velikega števila strok v procesu zdravja, temveč tudi zaradi drugih razlogov bi bil zagotovo preciznejši kak drug izraz (npr. zdravstvena asistenca na daljavo). Neprimeren je tudi izraz zdravljenje na daljavo, ker vedno ne izvajamo zdravljenja, lahko je odprava motenj v kolikor ni evidenten bolezenski proces ali preventivno presejalni ukrep.

Modernizacija zdravstvenega sistema je že danes nujnost, to pa ni le oprema temveč tudi organiziranost in vzgoja. Zdravstveni kadri se bodo morali prilagoditi uporabljanju najsodobnejših tehnologij, prav tako se bodo usposobili tudi uporabniki zdravstvenih storitev. Naš razvoj bo zagotavljal enostavno in prijazno uporabo ob najkompleksnejši tehnološki rešitvi. Nadgradnje sistemov bodo zaradi nenehnega razvoja edine stalnice. Danes relativno drag in ne dovolj efektiven zdravstveni sistem bo samoumevno moč reorganizirati v učinkovit in bistveno cenejši sistem.

Našo tarčno populacijo je sprva predstavljal starostnik. Po študiji Združenih narodov za Evropo (UN) bodo stari 65+ do leta 2050 predstavljali 30% vsega evropskega prebivalstva, od tega jih bo 18% starejših od 80 let. Zaradi procesa staranja se z leti zmanjšujejo zmožnosti za samostojno življenje v lastnem bivalnem okolju. Evropa spoznava, da problema zagotavljanja dogovorjenih zdravstvenih in socialnih pravic tej kategoriji prebivalstva ne bo mogoče reševati zgolj z do sedaj uporabljanimi modeli, ker jih preprosto finančno več ne zmore. Razviti je potrebno nove rešitve in vpeljati nove oblike obravnave, pristopa in storitev, ki bodo bolj učinkovite v pomoči tem osebam in finančno manj zahtevne, kot je institucionalno varstvo. Ker pa je zdravljenje starostnika kompleksno in zahtevnejše od povprečno stare populacije, in se uporaba tehnologij deloma prekriva z uporabo v drugih zdravstvenih strokah, smo se odločili za širši, predvsem pa celostni pristop uporabe IKT, ki bo uporabna,

prilagodljiva (EU nima standarda), prenosljiva in nepogrešljiva.

Evropska komisija se zaveda potenciala, ki ga ima v zdravstvu uporaba IKT, zlasti telemedicine, zato že 20 let sofinancira raziskave in razvoj na tem področju.

Telemedicina lahko izboljša dostop do posebne zdravstvene oskrbe na področjih s premalo strokovnjaki ali v območjih z oteženim dostopom do zdravstvene oskrbe. Monitoring na daljavo lahko izboljša kakovost življenja kronično obolelih pacientov in skrajša bivanje v bolnišnici. Z inovativnimi storitvami TM se lahko skrajšajo čakalni seznami, izboljša uporaba virov in poveča produktivnost dela pri nudenju zdravstvenih storitev. Aplikativnost je izjemna tudi na področju preventive, uporabe presejalnih (screening) inštrumentov, nadzorovanja kroničnih stanj in umestitve rehabilitacijskih postopkov. Primer: Prototipno bomo prvi opravili diagnostiko in obravnavo (odpravo, zdravljenje) depresije na daljavo. Glede na to da je bila depresija že pred leti poimenovana kot bolezen stoletja, je realizacija takšnega primera temelj za analogne rešitve na področju duševnega zdravja. Prikazali bomo možnost za predklinično zaznavanje demence, kar se bo nenazadnje odražalo na življenjski dobi in kvaliteti življenja, vzpostavili pa bomo tudi monitoring na področju antipsihotične terapije z meritvami stranskih učinkov zdravil ter tako vršili korekcijo v doziranju ali zamenjavi terapije. S slednjim bomo vplivali na kvaliteto zdravljenja, krajšanjem ležalne dobe ali vplivali na možnost ambulantne obravnave, ki je cenejša od hospitalne.

Meritve avtonomnega živčnega sistema (EKG, EMG, PGR, pulz, dihanje, ...) pokrijejo precejšnji del potreb obravnave najpogostejših telesnih bolezni. Z aplikacijo bomo pokrili velik del internističnega, nevrološkega in duševnega področja (npr. meritve stresnega stanja). Rutinska dejavnost bo v vzajemni zanki spodbujala razvoj tehnoloških in biomedicinskih strok. Potrebno bo izboljševati senzorje za zajemanje podatkov, telekomunikacijske povezave, programska okolja (inteligentni sistemi za analizo in kvantifikacijo velikih količin podatkov), jih usklajevati z razvojem biomedicinske stroke, organiziranostjo zdravstvene dejavnosti (transformacija podatkov, primernost podatkovnih zbirk) in nadgrajevati celoten sistem (biomedicinski in tehnološki) za potrebe obravnavanja motenj in bolezni. Iz navedenega je moč razpoznati trajnost sodelovanja in nenehno vzajemno sodelovanje, ki bo po vsej verjetnosti oblikovalo tudi nove poklice in medresorske znanosti, ki terjajo sodelovanje večih fakultet.

2. Pregled stanja v svetu

V svetu obstajajo pilotski sistemi telemedicine ali teleoskrbe že v večino bolj razvitih držav, tako tudi v Evropi in celo na Hrvaškem poskuša »Ericsson Nikola Tesla« prodreti s pilotskim projektom za telemedicino, ki pa ga za sedaj še v veliki meri financira sam. Evropa investira v infrastrukturne aktivnosti, ki so potrebne za izvedbo telemedicine kot so investicije in spodbude za gradnjo širokopasovnih omrežji, financiranje razvojno/raziskovalnih projektov na temo telemedicine in e-zdravja, spodbujanje združevanja relevantnih ekspertov v mrežah odličnosti, spodbujanje standardizacije področja in seznanjanje javnosti in politike z nujnostjo za vzpostavitev telemedicinskih platform. Celoten pregled aktivnosti v okviru 6 OP v obdobju 2002-2006 je podan v dokumentu »eHealth portfolio of projects FP6«http://ec.europa.eu/information_society/activities/health/docs/publications/fp6upd2007/fp6intro1.pdf. V nadaljevanju bomo predstavili nekaj izmed današnjih telemedicinskih aplikacij in projektov, ki so vezani na našo prijavo z uporabljenimi organizacijskimi in tehnološkimi rešitvami.

2.1 Primera delujočih komercialnih sistemov

CardioNet (http://www.cardionet.com/index.htm) je komercialno združenje s sedežem v ZDA, ki ponuja telemetrične zmogljivosti za izboljšani kardiološki monitoring v daljših časovnih obdobjih (Mobile Cardiac Outpatient Telemetry™ (MCOT™)). Merilec EKG signalov je sestavljen iz štirih elektrod, žično povezanih z signalno elektroniko in oddajnikom za brezžični prenos do osebnega terminala, ki analizira in prikazuje meritve. Svojo začetno ponudbo so nadgradili z sodobno analizo EKG meritev, vključujoč obdelavo v realnem času (beat-to-beat), avtomatizacijo detekcije aritmij, in brezžični prenos EKG

signala do diagnostičnega centra. Prenos izvedejo preko uporabnikovega telefona ali pa ponudijo napravo z vgrajenim vmesnikom za prenos podatkov preko mobilnega omrežja. Pravijo, lahko odkrivajo redko pojavljajoče aritmije, ki jih 2-3 dnevni Holterji dostikrat ne odkrijejo, da pomagajo zmanjševati umrljivost, in lajšajo življenje oslabelim uporabnikom s tem da omogočajo hitro diagnozo in ukrepanje predvsem pri pacientih z obolelim srcem. Po končani uporabi lahko uporabnik vrne napravo kar po pošti. Poleg osnovne dejavnosti ponujajo še šolanje za paciente, svetovalca, ki najde finančno najugodnejšo rešitev za pacienta in stalno dostopnega tehnično/medicinskega eksperta za pomoč uporabnikom.

Card Guard (http://www.cardguard.com/newsite/index.asp) je podobno podjetje s sedežem v Švici. Njihova ponudba je širša, saj so lahko nadzorujejo paciente z različnimi boleznimi in tudi zdrave ljudi. Ponujajo inovativne telemedicinske tehnologije za monitoring rizičnih in kronično bolnih uporabnikov (cardiologija, visok tlak, diabetes, pulmologija, nosečnost in ginekologija) in tistih, ki potrebujejo oskrbo na domu. Njihov program je prilagojen tako za paciente kot za ostalo zdraviliško (wellness) javnost. Tehnične rešitve so podobne kot pri sistemu CardioNet, z razliko, da imajo precej več možnosti. Zanimiva je njihova naprava za »wellness« uporabo HealthePod™, ki je prilagojena za enostavno osebno uporabo z majhnim prikazovalnikom (display) in USB ali Bluetooth komunikacijo za shranjevanje meritev na osebni računalnik in za spletno uporabo. Omogoča spremljanje ali nadziranje 10 zdravstvenih ali fitnes količin kot so: enokanalni EKG, telesna masa, kalorimeter, analizator stresa, itd. Tudi to podjetje ponuja celo vrsto dodatnih uslug, ki pomagajo uporabniku pri izbiri njemu prilagojene usluge.

2.2 Primera EU projektov

M-POWER (http://www.sintef.no/Projectweb/MPOWER/) je eden od več kot osemdeset projektov financiranih v okviru FP6 IST in FP7 razpisov s področji e-health, e-Inclusion, e-accessibility. Njegov osnovni namen je razvoj prosto dostopne SOA programske opreme za podporo ostarelih ljudi. Zanimiv je zato, ker so v okviru projekta izvedli tudi več pilotskih študij, na Norveškem, Avstriji, Poljski in Nizozemski, o učinkih predlaganih rešitev na zdravje in aktivnost ostarelih, o stopnji sprejemanja nove tehnologije s strani uporabnikov ter o drugih socioloških aspektih teleoskrbe. Predlagali so rešitve, ki so v skladu z idejo »pametne hiše«, vključujoč vidike zasebnosti in varnosti informacij, primernih informacijskih modelov in uporabnosti ponujenih rešitev. Upoštevajo obstoječe standarde s področja aplikacij v e-medicini kot so ISO, CEN TC251 in HL7 (http://www.hl7.org/) ter priporočila evropskega združenja za bivanje starejših oseb (The European Association of Homes and Services for the Ageing (EAHSA).

Doc@Hand (http:// services.txt.it/docathand/ ) ja napredna platforma izdelana v okviru FP6, ki omogoča enostaven dostop do različnih medicinskih podatkov: kartotek pacientov, podobnih kliničnih primerov in morebitnih dodanih informacij, ki strokovnemu medicinskemu osebju za telemedicino in teleoskrbo omogoča dostop do geografsko in institucionalno porazdeljenih podatkov. Danes je tak način nujen saj podpira sodelovanje strokovnjakov z uporabo sodobne informacijske tehnologije in s tem povečuje kvaliteto diagnoz ter znanje strokovnega osebja. V okviru tega projekta so v največji meri poskušali reševati tudi problem varnosti in dostopnosti podatkov. Razvili so vrsto programskih orodji, ki pomaga zdravstvenemu osebju pri njihovem delu, saj skrajšuje čas do diagnoz, zmanjšuje ceno oskrbe, pomaga pri zbiranju in obdelavi obstoječih medicinskih znanj ter prispeva k boljšim odločitvam ob tem da je poskrbljeno za varnost in zasebnost pacientovih podatkov.

2.3 Primeri projektov usmerjenih v telesne senzorje

Biomedical Wireless Sensor Network Project (http://www.bwsn.net/tiki-index.php) je neprofitni konzorcij, ki raziskuje vse aspekte uporabe telesnih senzorjev, od njihove sociološke in psihološke sprejemljivosti, varnosti in načina upravljanja do tehničnih podrobnosti, kot so brezžičnost, komunikacijski protokoli, poraba energije itd. Projekt je osredotočen na uporabo in integracijo obstoječih sistemov z nadgradnjo v smislu varnosti in učinkovitosti ter brezžične uporabe. Razvijajo

tudi poslovne vidike telemedicine in raziskujejo možne modele sodelovanja med partnerji na projektu. Primer uporabe senzorjev pri srčni operaciji na delujočem srcu je projektna skupina pokazala na YouTube http://www.youtube.com/watch?v=Zxqj1BcBpIg&NR=1

Body Sensor Networks Yang, Guang-Zhong (Ed.) - Cambridge University, 2006 je ena od prvih knjig s področja telesnih senzorjev. Avtorji opisujejo brezžično povezane senzorje gibanja na različnih delih človeškega telesa, ki zajemajo podatke v realnem času in na ta način ponujajo številne možnosti za zahtevno računalniško analizo teh podatkov. Izračunamo lahko hitrost in način gibanja, medsebojne položaje različnih delov telesa, gibljivost sklepov in podobno. Na področju telesnih senzorjev se v zadnjih petih letih redno sestajajo interdisciplinarni strokovnjaki, ki razvijajo bodoče standarde in referenčne rešitve.

3. Opis tehnične izvedbe senzorskega dela

Osnovne tehnične rešitve, uporabljene v našem predlogu telemedicinskega sistema, povzete tudi po obstoječih sistemih, kaže slika 1. Gornji del slike prikazuje senzorski sistem telemedicine s posameznimi sestavnimi enotami in medsebojnimi podatkovnimi povezavami. Izvor podatkov so meritve na oskrbovani osebi, ki so pridobljene s pomočjo telesnih senzorjev. Posebno pomembno se nam zdi, da so senzorji zasnovani tako, da so sprejemljivi za oskrbovane osebe s tem, da jih čim manj motijo pri njihovih aktivnostih in da so vredni zaupanja tudi s sociološkega stališča. Ti zahtevi pomenita, da bodo senzorji majhni in lahki, enostavni za uporabo, neinvazivni in varni ter v glavnem brezžično povezani z osebnim terminalom.

Potrebna elektronika za zajemanje in prenos podatkov bo izvedena z najsodobnejšimi tehnologijami in zasnovana tako, da bo odprta za nadomeščanje vedno novih tehnologij. Npr. brezžični Bluetooth prenosni medij, ki je vgrajen v današnje mobilne telefone, bo mogoče brez večjih težav zamenjati z bodočimi tehnologijami, z znatno manjšo porabo energije. Poleg tega bomo predvideli zbirno enoto senzorskih podatkov, ki bo služila za morebitno lokalno zbiranje zajetih podatkov iz več bližnjih brezžičnih elektrod (telesna temperatura, ECG, EEG, gibanje, itd). Ta enota bo omogočala optimalno prilagoditev porabe energije, hitrosti prenosa in jakosti elektromagnetnega polja na telesu. Na sliki 1. je prikazana z modrim krogom na telesu uporabnika sistema.

Porabo energije bomo zmanjšali še na druge inovativne načine. Npr. namesto standardnega 12-kanalnega EKG bomo prenašali le 3-kanale iz katerih bomo aproksimirali standardni 12-kanalni EKG na personaliziran način, za vsakega pacienta optimalno, ali pa bomo iz senzorjev za EKG izračunali signal pogostosti dihanja in s tako zmanjšali število potrebnih senzorjev. Senzorske podatke bomo lokalno obdelovali, da bi zmanjšali potrebno prenosno širino in posledično porabo energije, npr. v »pametni elektrodi« bomo izračunali pogostost srčnega utripa, odkrivali snovne anomalije, uporabili postopke za zgoščevanje podatkov in podobno.

Zajete in delno obdelane podatke bomo prenesli do osebnega terminala, bodisi neposredno ali pa preko opisane zbirne enote senzorskih podatkov. Osebni mobilni terminal bo običajno mobilni telefon, prenosni računalnik, posebej prilagojen terminal za starejše osebe in podobno. Njegova vloga bo trojna: lokalno prikazovanje meritev, bodisi za bolj naprednega uporabnika ali pa za zdravnika, ki bi npr. prišel na obisk k pacientu; zahtevnejša lokalna obdelava izmerjenih meritev (npr. detekcija nevarnih stanj, zgoščevanje podatkov, enostaven komunikacijski vmesnik s pacientom); in vmesnik za komunikacijo s prenosnimi potmi do komunikacijsko operativnega podpornega centra (KOPC).

KOPC bo lahko povezan z osebnimi terminali uporabnikov preko vseh možnih načinov brezžične komunikacije kot so mreža mobilne in fiksne telefonije, internet, optične povezave, itd. V centru bo zasnovana baza podatkov za vse uporabnike, ki bodo lahko uporabniki, ki so se prostovoljno vključili v

sistem zaradi različnih vzrokov (oslabelost, šport, osebna varnost), taki, ki jih bo v sistem vključil zdravnik zaradi potreb oskrbe, diagnostike ali zdravljenja in uporabniki, ki jih bo lahko vključila pooblaščena oseba v urgentnih primerih (urgenca, poškodbe, reševalci). Zasnova podatkovne baze bo povzeta po obstoječi podatkovni bazi zdravstvenih zavarovancev, s posebno skrbjo na varnosti podatkov in zanesljivosti delovanja.

Poleg podatkovne baze uporabnikov pa bo v operativnem centru nameščena programska opremo za podporo strokovnemu medicinskemu osebju pri spremljanju uporabnikov. Tu mislimo na programe za prikaz in diagnostično obdelavo podatkov na nivoju, ki bo inovativno združeval računalniške ekspertne sisteme podprte z obstoječim medicinskim znanjem in uveljavljenimi medicinskimi postopki v nujnih primerih in zdravnikove odločitve. Ta del podpornega centra bo v začetku izpolnjeval le najmanjši zahtevani nabor zahtev, ki jih bo predpisala medicinska stroka. Raziskali bomo pa tudi možnost, da bi se sistem neprestano izpopolnjeval, saj bomo vanj vgradili postopke strojnega učenja iz obstoječih primerov.

Zadnja funkcija KOPC pa bo sistem ukrepanja, ki bo slonelo na dosedanji praksi, le da bo vodeno veliko hitreje in bolj organizirano. Pri nujnih primerih bo čas ukrepanja krajši, poleg tega pa bo stanje pacientov neprestano dokumentirano. V primeru oskrbovancev pa bo zdravnik lahko zaznal tudi spremembe, ki jih sicer oskrbovanec ne zna opisati oz. jih ni moč izmeriti ravno na pregledu v zdravstveni ustanovi. Tudi v primeru oskrbe bo sistem ponujal veliko količino že obdelanih primerov in s tem veliko podatkov in možnosti za izboljšanje postopkov ukrepanja.

Slika 1. Konceptualna shema sistema telemedicine in teleoskrbe ter multimedijske komunikacije

4. Opis tehnične izvedbe multimedijskega dela

Pri medicinskem delu se čedalje bolj kaže tudi potreba za izmenjavo multimedijskih podatkov med zdravstvenimi ustanovami, kot so rezultati preiskav, slikanj, datotek, dokumentov. Izvedba omenjene komunikacije zahteva širokopasovne povezave, ki so danes že dovolj razvite in tudi že na razpolago v vseh Slovenskih medicinskih ustanovah. Ta del sistema je prikazan na spodnjem delu slike 1. Medicinsko osebje lahko izmenjuje podatke preko stacionarnih terminalov. Vsa izmenjava informacij se hrani v KOPC. Ovira za večjo informatizacijo in izvedbo prenosa elektronskih dokumentov je predvsem v priučenem načinu dela in nezaupanju v verodostojnost elektronskih dokumentov. Danes lahko obravnavamo te aktivnosti ločeno od sistema za prenos senzorskih podatkov, toda v prihodnosti bosta sistema čedalje bolj povezana. Rezultati pridobljeni v komunikacijsko operativnem centru bodo postali

tudi predmet izmenjave med medicinskimi ustanovami. Prav tako pa bodo elektronski dokumenti preiskav uporabnikov sistema uporabni za sprejemanje boljših medicinskih odločitev.

Poleg navedenega bo prenos multimedialnih informacij potreben tudi pri teleoskrbi. Na primer video posnetki in pogovor, bosta pogosto pomagali uporabniku, za boljše počutje oz. kot nasvet za nadaljnje ukrepanje. Le-ti se bodo prenašali od osebnega terminala, ki bo v tem primeru potreboval večjo pasovno širino komunikacijskega kanala, do komunikacijsko operativnega centra. Način hranjenja in obdelave multimedijskih podatkov ne bosta ključni točki naših raziskav in razvoja, vsekakor pa ju bomo upoštevali pri zasnovi predlaganega sistema. KOPC bo zasnovan tako, da bo omogočal prenos širokopasovnih informacij. Razvili bomo ustrezne komunikacijske in programske vmesnike, ki bodo služili za podporo in oskrbo uporabnikom in hkrati tudi za izmenjavo elektronskih dokumentov med medicinskimi ustanovami.

5. Nivoji upravljanja

Celoten sistem lahko formalno predstavimo kot porazdeljeno podtkovno bazo, ki jo je možno upravljati na različne načine. Možne so različne izvedbe telemonitoringa:

- enonivojsko – z enovitim sistemom za celo Slovenijo, ki ima skupni sistem diagnostike in ukrepanja. Tak sistem bi zahteval centralizacijo pri zbiranju in obdelavi podatkov ter ukrepanju, kar najverjetneje ne bi bilo dovolj učinkovito.

- dvonivojsko - telemonitoring je vezan na več izbranih ali na vse zdravstvene ustanove, ki servisirajo lokalno prebivalstvo. Lokalni centri so medsebojno povezani, povezani pa so tudi z glavnim centrom, lociranim blizu središča Slovenije. Taka organizacija zahteva bolj bogato kadrovsko zasedbo, hkrati pa bolj učinkovito razbremenjuje profesionalno medicinko osebje.

Predlagana rešitev bo vezana na obstoječo mrežo slovenskih medicinskih ustanov, ki že sedaj dobro pokrivajo celotno področje Slovenije. Upoštevali bomo medsebojno povezavo ustanov, ki bo še posebej pomembna za izmenjavo senzorskih multimedijskih podatkov. Na sliki 2. Je prikazana geografska razporeditev slovenskih zdravstvenih domov in bolnice. Končna odločitev o izbiri načina upravljanja bo sprejeta v zadnjem delu obdobja v katerem bo deloval center odličnosti, na podlagi izkušenj, meritev in optimalni izkoriščenosti finančnih in človeških virov.

Slika 2. Geografska razporeditev slovenskih zdravstvenih domov in bolnišnic.

6. Opis primerov uporabe sistema telemedicine in teleoskrbe v medicinskih aplikacijah

Infrastrukturni sistem telemedicine in teleoskrbe bo, kot je bilo opisano v prejšnjih poglavjih, izveden splošno in z odprtimi orodji, tako da bo primeren za uporabo na vseh področjih medicine. V fazi razvoja sistema pa bomo posebej preskušali in ovrednotili le nekaj testnih primerov, ki jih navajamo v tem poglavju. Večino teh del bomo izvajali v okviru delovnega sklopa DS 2. Medicinske raziskave in aplikacije.

6.1 Telemedicina v psihiatriji

6.1.1 Telemedicina in zgodnje odkrivanje blagih kognitivnih motenj pri preprečevanju demence

Demenca se pojavlja pri 5% ljudeh, ki so starejši od 65 let. Njena prevalenca se sočasno z leti povečuje. Je petkrat bolj pogosta pri osemdesetletnikih kot pri sedemdesetletnih in ocenjujejo, da bo leta 2030 vsaj 20% populacije, stare nad 65 let obolele za to boleznijo. Za sindrom demence je značilen globalen upad kognitivnih funkcij, spremembe v osebnosti, motivaciji in razpoloženju, bolnika pa postopoma onesposobi za opravljanje osnovnih dnevnih aktivnosti.

Stopnja med normalno kognitivno učinkovitostjo pri starostnikih in demenco je stopnja blage kognitivne oškodovanosti (Mild cognitive impairment, v nadaljevanju MCI). Prizadene lahko številna kognitivna področja: pozornost, zaznavne sposobnosti, epizodični spomin, jezik in izvršitvene sposobnosti. Predstavlja 4 do 5-krat večje tveganje za razvoj Alzheimerjeve bolezni. 80% posameznikov z diagnozo MCI v obdobju desetih let po postavljeni diagnozi zboli za Alzheimerjevo boleznijo. Medtem ko povprečna letna stopnja nazadovanja na stopnjo AD v populaciji z MCI znaša med 10-15%, pa je med

zdravimi starostniki takšnih le 1-2%. Zgodnje odkrivanje in pravočasna pomoč posameznikom z MCI lahko upočasni degenerativne procese in tako njim kot tudi njihovim svojcem omogoča bolj kvalitetno življenje dalj časa.

6.1.2 Telemedicina in spremljanje neželjenih učinkov zdravil pri zdravljenju depresije

V primeru uporabe antidepresivov se lahko pojavljajo bruhanje, slabost, driske, krči, , tremor, glavobol in vrtoglavica, pri nekaterih bolnikih pa sedacija. Pri nekaterih bolnikih SSRI antidepresivi spremenijo glikemično kontrolo, kar zahteva takojšnje ukrepanje (pogostejše merjenje ravni krvne glukoze in hitro prilagajanje odmerkov antidiabetičnih zdravil). Pogosto se v času akutnega zdravljenja pojavi znižanje telesne teže, med vzdrževalnim zdravljenjem pa njeno povečanje. Pri nekaterih antidepresivih se lahko pojavi povišanje krvnega tlaka ali potreba po uravnavanju antihipertenzivne terapije. Zaradi morebitne depresije kostnega mozga mora biti zdravnik pozoren za povišano telesno temperaturo, vneto grlo in morebitne druge infekcije pri bolnikih, potrebna je takojšnja kontrola kompletne krvne slike. Antidepresiv občasno poviša plazemsko raven holesterola in trigliceridov, zaradi česar pri rizičnih bolnikih kontroliramo te metabolne parametre. Pomembna je tudi komorbidnost depresije s telesnimi boleznimi. Depresija je dejavnik tveganja pri telesnih boleznih, kaže se tudi v povezavi med srčno žilnimi obolenji in depresijo, saj je depresija pomemben dejavnik tveganja za razvoj koronarne bolezni. Depresivni bolniki imajo v primerjavi z nedepresivnimi štirikrat pogosteje miokardni infarkt. V prvih 6 mesecih po miokardnem infarktu je smrtnost depresivnih bolnikov tri do štirikrat večja. Depresija se pojavlja pri 30 % bolnikov s sladkorno boleznijo tipa 1 in 2. Povzroča več debelosti, več komplikacij, višje zdravstvene stroške, slabšo glikemično kontrolo, manj fizične aktivnosti, slabše redno jemanje zdravil in slabšo kvaliteto življenja. Pogosta je tudi pri tumorskih obolenjih, možgansko žilnih obolenjih, obolenjih ščitnice in številnih drugih. Zaradi komorbidnosti je zdravljenje težje, možnost neželenih učinkov in škode bolnikovemu zdravju pa večja. V DS bomo vpeljali tudi druge oblike zdravljenja depresij npr. kognitivno – psihoterapevtsko obravnavo.

6.1.3 Telemedicina in spremljanje neželjenih učinkov zdravil pri zdravljenju psihoz (Telepsydrugmonitor)

Antipsihotiki so pri zdravljenju psihotičnih motenj nepogrešljivi. Vsi, predvsem atipični, pa lahko povišajo ravni krvne glukoze in predisponirajo sladkorno bolezen. Vse bolnike, ki prejemajo atipične antipsihotike, stalno spremljamo na znake razvoja sladkorne bolezni, debelosti in hiperholesterolemije. V primeru povišanja vrednosti omenjenih parametrov zamenjamo zdravila. Uporaba nekaterih antipsihotikov vodi v podaljšanje QTc intervala, kar je dejavnik tveganja za ventrikularne aritmije „torsades des pointes” oz. za polimorfno ventrikularno tahikardijo, za katero so značilni QRS kompleksi spreminjajoče se amplitude. Lahko je asimptomatska ali pa povzroča vrtoglavico, palpitacije in sinkope. V redkih primerih napreduje do ventrikularne fibrilacije z srčnim zastojem in nenadno smrtjo. Običajno se pojavi, ko je QTc interval daljši od 500 msec. Antipsihotiki povzročajo tudi druge EKG spremembe, kot je atrijska fibrilacija, povečanje P-vala, spremembe T-vala in popolni ali delni kračni blok. Redna kontrola EKG je pogosto nujna, predvsem pri rizičnih bolnikih, ker se lahko pojavi ortostatska hipotenzija.

Ekstrapiramidni stranski učinki (EPS) so pomembni predvsem pri uporabi klasičnih antipsihotikov, pojavljajo pa se tudi pri atipičnih antipsihotikih. Pogosto so neprijetni, napačno diagnosticirani in vodijo v funkcionalno oškodovanost ter slabo sodelovanje bolnikov v zdravljenju. Spremljati moramo pojav in sam tremor, salivacijo, parkinsonizem, takutne distonije in diskinezije, ter pojav tardivnih diskinezij, ki izjemno invalidizirajo bolnika.

Bolj ali manj vsi antipsihotiki posledično povzročajo določeno stopnjo povečanja telesne teže po približno 4 do 12 tednih zdravljenja. Sprememba telesne teže je odvisna tudi od začetnega indeksa telesne teže (ITT).

Prag vzdražnosti za epileptične krče najpogosteje znižajo klasični antipsihotiki in klozapin. Pogostnost

krčev je odvisna od višine odmerkov zdravila, vzrok pa sta najpogosteje hitro višanje odmerkov in njihova nenadna prekinitev. Bolnik potrebuje redne kontrole, spremljanje učinkovitosti in varnosti zdravljenja.

6.2 Telemedicina in teleoskrba v zasebni praksi

Za telemedicinski sistem smo si zamislili dva projekta, in sicer skupnostno psihiatrično obravnavo in dolgotrajno oskrbo kroničnih bolnikov na domu. Prvi projekt bo potekal v sklopu stanovanjskih in drugih skupnosti psihiatričnih bolnikov, pri katerih je individualna obravnava že dobro začrtana, obravnave celotne skupnosti pa še ni. Ker takšna skupnostna terapija pomembno vpliva na kakovost bivanja, strokovnjakov pa je premalo, da bi, glede na naraščajoče potrebe, terapijo izvajali osebno, bomo vzpostavili center, iz katerega bodo psihiatri, psihologi in delovni terapevti preko IK tehnologij povezani s stanovanjskimi in drugimi skupnostmi na območju vse države ter izvajali skupnostne obravnave glede na razpored, ki ga bodo sestavili koordinatorji skupnosti.

V drugem primeru se bomo osredotočili na populacijo kroničnih bolnikov. Pacient in zdravnik bosta povezana preko zaščitenega in varnega komunikacijskega medija ter s skupnim vpogledom v uporabljen nabor podatkov. Meritve v zvezi z boleznijo bo lahko opravljal in beležil pacient sam ali s pomočjo medicinske sestre na domu. Merljivi parametri bodo na primer: telesna teža, RR, KS, lipidogram, temperatura, PČ, stopnja bolečine, stopnja depresije, itd.

Pri pacientu pričakujemo naslednje pozitivne učinke: fizična in psihična razbremenitev, večji občutek varnosti, večja izpovedna možnost, večja urejenost podatkov, vezanih na bolezen in s tem boljša terapija, zmanjšan stres v čakalnici, boljša urejenost bolezni, boljša funkcionalnost pacientov v daljšem obdobju (delovna populacija – krajši stalež, starejša populacija – boljša funkcionalnost, večja neodvisnost od tuje pomoči) ter možnost partnerskega odnosa, ki ga občuti pacient. Pri zdravniku pričakujemo naslednje pozitivne učinke: manjši stres zaradi večje preglednosti podatkov, urejenega naročanja, seznanitvijo z akutno problematiko pred osebnim stikom, krajši reakcijski čas na patološki odklon podatkov, neposredno sodelovanje med zdravniki, ki obravnavajo istega pacienta, celosten dostopnost do podatkov, ki vplivajo na več kroničnih bolezni, za specialiste z različnih področji medicine.

6.3 Telemedicina in teleoskrba srčnih bolnikov

V okviru zdravstvene dejavnosti bolnikov srca in ožilja je potrebno obvladovati področje telediagnostike, monitoringa na daljavo in telekonzultacij in v ta namen razvijati tudi sodobne informacijsko komunikacijske sisteme, ki jih odlikuje hitrost, varnost in zanesljivost.

Trenutno so v bolnišnicah v uporabi različni sistemi za zajem videa in slike. Vsak proizvajalec diagnostične opreme (endoskop, ultrazvok, kamere v operacijskih dvoranah…) ima svoj sistem za zajem videa in slike. Ti sistemi se razlikujejo v standardu video zapisa, načinu shranjevanja, mediju za shranjevanje, arhiviranju, dostopu, pregledovalnikih…Tako različni sistemi lahko da ustrezajo znotraj oddelkov oz. znotraj ene zdravstvene ustanove, vendar ne ustrezajo več, kadar potrebujemo izmenjavo informacij med različnimi zdravstvenimi inštitucijami. Vse zgoraj navedene razlike predstavljajo oviro za celovito ter hitrejšo diagnostiko in za konzultacije na daljavo pri bolnikih s srčno-žilnimi boleznimi.

Pri izmenjavi informacij o bolnikih je potrebno poskrbeti, da le-te ne uhajajo iz zdravstvenih ustanov in da je hkrati poskrbljeno za beleženje, kdo od zunanjih sodelavcev oziroma partnerjev dostopa do njih. Sam prenos podatkov mora biti tudi zanesljiv, da so informacije pravočasno na voljo, saj je lahko v določenih primerih tudi časovna komponenta odločilna. Varnost v informacijsko-komunikacijskih sistemih je potrebno obdelovati celovito in sicer v zdravstvenih inštitucijah, njihovih medsebojnih povezavah in povezavah do končnih uporabnikov.

Med zdravstvenimi ustanovami in njihovimi sodelavci oziroma partnerji, ki opravljajo določena dela iz oddaljenih lokacij je potrebno zagotoviti varno in zanesljivo povezljivost (tudi s pomočjo redundantnih

povezav med lokacijami). Hkrati je potrebno poskrbeti tudi za ustrezno prioritizacijo (dajanje prednosti) in razvrščanje prometa. Poskrbeti je potrebno za ustrezno preverjanje in beleženje dostopov oddaljenih uporabnikov. V sami zdravstveni ustanovi je potrebno zagotoviti varno razmejitev na vsebinsko ločene segmente in uvesti politiko, ki natančno določa, kdo, od kod in kdaj lahko dostopa do določenih informacijskih virov. Poleg tega je potrebno zagotoviti ustrezno zaščito, ki bo omogočala varen prehod iz lokalnega omrežja in kateregakoli specialnega notranjega segmenta v Internet.

Rezultat raziskav bo varen in zanesljiv sistem za shranjevanje, pregledovanje, urejanje slik in video vsebin. Prav tako se bo posvet lahko vršil na daljavo v povezavi z različnimi zdravniki.

Testni primer 1 - Izmenjava medicinskih informacij in multimedijskih podatkov med zdravnikoma.

Z uvedbo takega sistema se bodo dolgoročno pokazale naslednje prednosti za uporabnike (bolnike, zdravstveno osebje in inštitucije za oskrbo pacientov):

dostopnost tehničnih možnosti za zajem, spremljanje, analizo in/ali primerjavo razvoja

bolezni pri pacientih, dostopnost tehničnih možnosti za eventualno pridobitev drugega mnenja o posameznih

primerih, zagotovitev ustrezne baze podatkov različnih tipičnih in manj tipičnih bolezenskih stanj za

izobraževalne potrebe in telekonference, dokumentirana in shranjena medicinska kartoteka za kasnejši ponovni pregled in

eventualno konzultacijo oz. potrditev diagnoze, varnost in zanesljivost medicinskih podatkov .

6.4 Telestroke – praktična izvedba v okviru  CO-TT  

Obravnava bolnika z možganskožilno boleznijo je multidisciplinarna in zahteva tako nove organizacijske prijeme, ki vključujejo urgentno obravnavo v predbolnišničnem okolju, kot tudi spremembo obravnave v specializiranem bolnišničnem prostoru ter zgodnjo obravnavo v multidisciplinarni rehabilitacijski skupini. Pri obravnavi bolnika je pomembna vloga zdravstvenega sistema, ki ga je treba prilagoditi in njegov način delovanje napraviti bolj učinkovit. Stopnja nujnosti je enaka kot pri akutnem koronarnem sindromu ali hudi poškodbi glave, kar je že leta 2000 sprejelMednarodni svet za reanimatologijo (ILCOR – International Liaison Committee on Resuscitation). Čas od nastopa simptomov in znakov možganske kapi in njenega zdravljenja mora biti čim krajši, kar zmoremo doseči le z ustrezno logistiko, ki pa mora biti prirejena za vsako območje v Sloveniji posebej glede na zmogljivosti posamezne regije.

Končni učinek zdravljenja akutne ishemične možganske kapi z rekombinantnim tkivnim aktivatorjem plazminogena je odvisen od časa med nastopom bolezni in vnosa zdravila, ki naj bi bil krajši od ene ure. Številne bolnišnice v razvitih državah in tudi pri nas nimajo na razpolago 24-urne službe, ki bi

pokrivala področje cerebrovaskularnih bolezni, in zato tudi ne možnosti za ustrezno zdravljenje bolnikov z akutno možgansko kapjo. Enako pomembna je tudi pravilna diagnoza. Možnost, da bi skrajšali čas celotne oskrbe in postavili pravilno indikacijo za tako zdravljenje pri bolniku z akutno ishemično možgansko kapjo, je medicina na daljavo, imenovana Telestroke. Bolnišnice, ki nimajo ustrezno izobraženega nevrologa na področju možganskožilne patologije ali ne premorejo nobenega nevrologa, lahko prek videa prenesejo nevrološki status in slike računalniške tomografije v ustrezen center. Tak postopek omogoča večjemu številu bolnikov ustrezno zdravljenje in skrajša čas do dajanja zdravila, ki bi ga sicer porabili za prevoz v drugo, ustreznejšo ustanovo.

Številne študije so pokazale, da lahko prek videokonference ocenimo nevrološki status (National Institut for Health Stroke Scale – NIH SS) in tako indiciramo zdravljenje z rt-PA (5-7). Na ta način lahko v bolnišnicah, ki imajo sicer CT, ocenimo primernost takega zdravljenja in ga po potrebi tudi spremljamo (pozitivne izkušnje iz projekta (Telemedicine Pilot Project of an Integrated Stroke Care – TEMPiS).

Podobne projekte zasledimo tudi v drugih državah (ZDA, Kanadi, Franciji itd.). V ZDA izvajajo zdravljenje akutne ishemične možganske kapi tudi že v reševalnem vozilu, v katerega je nameščena računalniška tomografija. Tako kot s katerimkoli drugim tehnološkim napredkom ima tudi Telestroke svoje šibke strani, ki se razkrivajo pri zanesljivosti delovanja, pridobivanju dovoljenja za zdravljenje, zasebnosti in zaupanju med centri.

Testni primer 2 - Daljinska telemedicina in teleoskrba za pokirurško spremljanje in rehabilitacijo.

Razen v Kliničnem centru Ljubljana, Splošni bolnišnici Maribor in Splošni bolnišnici Celje v Sloveniji nimamo zagotovljene 24-urne prisotnosti nevrologa v bolnišnici ali pa bolnišnice nevrologa nimajo niti zaposlenega. Prav tako je s 24-urno prisotnostjo (le pripravljenostjo) radiologa oz. nevroradiologa. Z izgradnjo nove nevrološke klinike v Ljubljani pa bi lahko uvedli tudi novost na področju zdravljenja možganske kapi – Telestroke. Center za spremljanje bi bil Klinični oddelek za nevrologijo, Enota za možgansko kap. V tej enoti bo stalno na razpolago nevrolog, ki bo usposobljen za delo z bolniki z možgansko kapjo in bo poznal tudi delo z računalnikom. Na razpolago mu bo tudi nevroradiolog (želimo si 24-urno dežurstvo nevroradiologa). Zdravniki iz vseh slovenskih bolnišnic, ki nimajo na razpolago 24-urne prisotnosti nevroradiologa ali ga sploh nimajo, se bodo lahko tako posvetovali z nevroradiologom (ne samo za področje možganske kapi) in tudi z nevrologom.

6.5 Zgodnje pobolnišnično spremljanje kirurškega bolnika

Kirurškega bolnika spremljamo po operaciji zaradi pravočasne detekcije zgodnjih pooperativnih komplikacij. Te se, pri različnih operacijah, pojavijo v obdobju cca. 14 dni po posegu. Do nedavna smo takega bolnika spremljali v bolnišnici. Tendenca današnje zdravstvene politike je čimbolj skrajšati čas hospitalizacije. To je možno samo, če poskrbimo za detekcijo zgodnjih pooperativnih komplikacij na

domu, ali v drugi nekirurški ustanovi. Danes zdravstveni sistem na to ni pripravljen. Zaradi neprilagojene patronažne službe in nezmožnosti rednega spremljanja takega bolnika na domu s strani zdravnika, je prišlo do povečanega pritiska na specialistične ambulante in se povečuje število kontrolnih pregledov po posegih.

Oskrbo kirurškega bolnika po operativnem posegu bi lahko izvajali v pogojih teleoskrbe. To je mogoče z opazovanjem merljivih, specifičnih in dovolj občutljivih parametrov, s pomočjo katerih bi lahko na daljavo spremljali bolnikovo zdravstveno stanje in s pomočjo katerih bi lahko pravočasno zaznali pojav zgodnje pooperativne komplikacije. Ti parametri bi morali biti taki, da bi nam lahko omogočili odločitev, ali bi lahko pri odpravljanju, bolnika z instrukcijami vodili na domu, oziroma da bi mu omogočili pravočasno strokovno intervencijo na domu oziroma v bolnišnici.

V okviru projekta je potrebno ugotoviti najpogostejše in pomembne zgodne pooperativne komplikacije za večino kirurških posegov. V začetni fazi sodelave v CO-TT je treba določiti specifične in občutljive parametre, ki jih je potrebno spremljati. Ugotoviti je potrebno metodo zaznavanja teh parametrov (merjenje telesne in lokalne temperature s senzorji, obseg otekline, bolečine po VAS, itd., z anketo, fotografijo, videofilmom, itd). Te parametre bi potem vsakega zase in vse skupaj testirali na skupini kirurških bolnikov v bolnišnici. V teku izvedbe projekta bi gornjo študijo ponovili na večji skupini bolnikov, po zgodnjem odpustu, na domu. V primeru uspešne realizacije bi lahko to pomenilo varnejše zgodnje odpuščanje kirurških bolnikov.

6.6 Uvajanje in spremljanje sistema za teleoskrbo pri starostnikih

Uvajanje in spremljanje sistema za teleoskrbo bomo izvajali tudi ob podpori osebja z izkušnjami s področji delovne terapije, zdravstvene nege, fizioterapije, sanitarnega inženirstva in izobraževanja v zdravstvu. Sodelovali bomo pri ugotavljanju potreb po telemedicinskih pripomočkih ki so primerni tako za nadzor telesnih funkcij, kot tudi za načrtovanje nadaljnjih postopkov rehabilitacije. Zdravje ni le odsotnost bolezni temveč je fizično, psihično in socialno blagostanje ter kot tako širši družbeni pojav. Turner (1995) ga opredeljuje na treh ravneh: sistemski oz. makro ravni (politika, zakoni), profesionalni ravni (zdravniško in zdravstveno osebje) in na osebni ravni (posameznik). Ta struktura se odraža v sodobnem pojmovanju zdravstvene skupine - na eni strani v naravi odnosov in na drugi v poudarjanju vključevanja uporabnikov. Kot dokazujejo številne študije, je eden konstitutivnih dejavnikov kakovosti skrbi za zdravje predvsem kakovost sodelovanja med ključnimi akterji. Opazen je trend uveljavljanja partnerskih interdisciplinarnih odnosov.

Usmerili se bomo predvsem na področje starostnikov, oseb, ki so stare 65 let in več, kjer bomo predlagali take rešitve, ki bodo omogočale starostnikom čim dalj časa ostati aktivni v svojem domačem okolju. Ocenili so, da ima vsaj polovica starostnikov težave s svojimi vsakodnevnimi aktivnostmi, velik problem pa so tudi padci in poškodbe. Zasnovali in ocenjevali bomo postopke in pripomočke za preprečevanje nenadnih padcev in za učinkovito intervencijo ob njih. Na osebni ravni zaznavanja zdravja in kvalitete življenja je predvsem opazna sposobnost telesne aktivnosti. Pri tem je pomembno poznati učinke različnih fizikalnih dejavnikov (toplota, tlak, svetloba, gravitacija, elektrika in magnetizem) na fiziološke odzive in fizično zmogljivost človeka ter možnosti njihove uporabe za zdravljenje mišično-skeletnih, respiratornih in kardiovaskularnih poškodb, bolezni in okvar. Usmerili pa se bomo tudi na nova področja, kot so monitor nosečnic in dojenčkov, kjer bomo uporabili naše izkušnje s področja babištva.

Testni primer 3 - Opozorilo za nujno medicinsko pomoč in ukrepanje.

Ravnotežje je eden pomembnih notranjih dejavnikov, z oceno katerega je mogoče napovedati ogroženost za padce pri starostnikih. Zaradi staranja je namreč opazen pomemben upad pri vseh sistemih, ki prispevajo k učinkovitemu ravnotežju. Na primer, zmanjša se število dlačnih celic vestibularnega sistema in ta postane manj zanesljiv, učinkovitost perifernega vida se zmanjša, kar pomembno vpliva na stabilizacijo nihanja telesa. Podobno velja tudi za somatosenzorični sistem. Pomembno se zmanjša tudi občutek za vibracije in občutek za lego in gibanje sklepov. Zmanjša se tudi gostota oživčenosti kože v področju stopala in podplata. Tudi živčno-mišični sistem se s staranjem spreminja. Zmanjša se mišična masa, moč in zmogljivost. V predlaganem RR projektu želimo poiskati mehanizme, ki so odgovorni za zmanjšanje zmogljivosti in na drugi strani najti učinkovite, hitre in poceni klinične teste, za predvidevanje ogroženosti za padce pri zdravih starostnikih, prav tako pa tudi pri tistih, ki imajo bolezen živčevja ali gibalnega sistema.

Uvajanje novih postopkov bo zahtevalo sodelovanje tako delovnih terapevtov na domovih uporabnikov, kot tudi medicinske patronažne službe. Sodelovali bomo pri izobraževanju zdravstvenega osebja in uporabnikov sistema za daljinsko oskrbo. Preizkusili bomo, kako bi se lahko pomoč in učenje na daljavo izvajala v okviru načrtovanega sistema. Učinkovitost razvitih pripomočkov bomo evalvirali tako z vidika njihove funkcionalnosti kot tudi z vidika sprejemljivosti za uporabnike. Ugotavljali bomo stopnjo sprejemanja in razumevanja delovanja pripomočkov ter sposobnost izkoriščanja njihove funkcionalnosti pri uporabnikih in pri medicinskem osebju. Za uporabnike bo pomembno ugotavljati tudi njihovo soočanje s pripomočki, njihov vpliv na samopodobo ter položaj v skupnosti. Sodelovali bomo pri izpopolnitvah preskušenih metod in pri izboljševanju načina uvajanja ter izobraževanja uporabnikov in zdravstvenega osebja.

6.7 Telemedicina redkih bolezni – medicinska genetika

Glavni politični izziv v prihajajočih letih na področju demografskih sprememb, gospodarstva, globalizacije in človeških potreb bi bil razvoj novih modelov trajnostne blaginje – tiste, ki ljudi spremlja skozi celotno življenje, še posebej tiste s posebnimi potrebami. Med njimi je posebna kategorija tistih, ki potrebujejo posebno skrb: pacienti z genetskimi obolenji, redkimi boleznimi. Redke bolezni so kronične, progresivne, degenerativne in življenjsko nevarne, ki velikokrat negativno vplivajo na kvaliteto življenja. Okrog 30 mio državljanov EU ima o težavo. Med njimi 80% z genskim izvorom. Obstaja posebna potreba po izgradnji skupnostnega omrežja ter javne zdravstvene zakonodaje za redke in genetske bolezni.

Genetske bolezni imajo posebno vlogo v številnih okoliščinah, od “klasičnih” genetskih napak, raka, kompleksnih obolenj ter odziva na zdravila (farmagenetika, farmagenomika). Trenutno je možno natančno diagnosticirati podedovano napako pri posameznikih za identifikacijo nosilca med družinskimi člani ter odkriti potencialne posameznike za kompleksne bolezni. Kakorkoli, četudi je na tem področju

prišlo do velikega napredka pri razumevanju osnovnih načel bolezni, le-ta še vedno ne sovpada s potencialimi izboljšavami oskrbe pacientov pri dednih in kompleksnih boleznih.

Telemedicina omogoča lažji dostop do zdravstvene oskrbe, izboljšuje kvaliteto življenja pacientov s kroničnimi genetskimi obolenji preko teleusposabljanja, telediagnostike in telemonitoringa. Najpomembnejši del genetske evalvacije pacienta z genetskimi težavami predstavlja genetsko usposabljanje – informative, pedagoški kontakt med strokovnjakom in pacientom, temelječ na individualnem pristopu, komunikaciji in spoštovanju.

Telegentska medicina je najprimernejša pot za izboljšan dostop do genetskih storitev na tem področju. Promovira ter izboljšuje kvantiteto ter kvaliteto genetskih storitev, prenosa znanja v skupnost ponudnikov genetskega usposabljanja ter uporabnikov. Dodatno se lahko telemedicine izvaja tudi v klicnih centrih, centrih za paciente in strokovnjake, elektronskih kontaktih s pacienti in sodelavci ter video konferencah s strokovnjaki.

ANG

1. Starting points

The development of information technology and telecommunications has reached a level at which it is reasonable to upgrade its applied usefulness for health care needs. The term “health” represents a broad concept and includes the participation of many professionals from various fields. Last but not least, prevention is also of special importance, along with active participation of the users of health care services, and their special motivation to prevent the development of and eliminate any disorders or diseases. The advantages of telemedicine applications in health care lie in their transparency and quick and precise data exchange, which enable more effective and above all more patient-friendly form of help. The most important factors include the reorganisation of the health care system, which will thus become significantly more accessible, inexpensive, just, selective, precise, complete, reviewable, less fallible and much more user-friendly.

In the Republic of Slovenia, cooperation between health care and technology has traditionally been good, but it could certainly have been better. Telemedicine as an interweave of innovativity and technological progress represents the central and currently also extremely important position, as it is an irreplaceable approach to health maintenance.

The very name of telemedicine (TM) demonstrates the recognition that there are two extensive and interconnected professional systems. Not only due to the important presence of a large number of professions in the process of ensuring health, but also for other reasons, some other term would probably be more appropriate (e.g. remote medical assistance). Remote treatment is also an unsuitable term because treatment is not always involved; it may also be about the elimination of disturbances if a disease process or preventative screening measure is not evident.

Nowadays, modernisation of the health care system is a necessity and it does not only involve equipment; it also includes organisation and education. Medical professionals will need to adapt to the use of the most modern technologies and the users of health care services will also need to be appropriately trained. Our development will enable simple and user-friendly use with the most complex technological solutions. Because of continual development, system upgrades will be the only constant. Nowadays, it is deemed self-understood that the relatively expensive and insufficiently effective existing health care system will be able to be reorganised into an effective and significantly less expensive system.

Initially, our target population consisted of the elderly. According to the United Nations (UN) Study for Europe, the elderly aged 65+ years will represent 30% of the total European population by the year 2050, and 18% of them will be over 80 years of age. Due to the ageing process, the ability of the elderly to live independently in their own home environment decreases with years. Europe is recognising that it will not be possible to solve the problem of ensuring the agreed health care and social rights for this category of the population solely by using the models which have been employed to date, because these are simply financially unmanageable. New solutions need to be developed and new types of management, access and services need to be introduced which will be more effective in helping these persons and will be financially less demanding than institutionalised care. But since the treatment of the elderly is complex and more difficult than the treatment of average aged population and the use of technologies partially overlaps with their use in other medical professions, we decided to employ a broader, and above all more comprehensive approach to the use of ICT, which will be applicable, adaptable (the EU has no standard for this), transferable and indispensable.

The European Commission is well aware of the potential for the use of ICT and telemedicine in particular in health care. Therefore, it has been co-financing research and development in this area for 20 years now.

Telemedicine has the power to improve access to special health care in areas with insufficient professionals or areas with difficult access to health care. Remote monitoring can improve the quality

of life of patients with chronic diseases and reduce the duration of their hospitalisation. With innovative telemedicine services, the waiting lists can be shortened, the use of resources can be improved and the productivity of work in the provision of health care services can be increased. Its applicability is also exceptional in the field of prevention, use of screening instruments, monitoring of chronic disorders and performance of rehabilitation procedures. Example: On a prototype basis, we will be the first to perform the remote diagnosis and management (elimination, treatment) of depression. Since depression was named disease of the century years ago, the realisation of such cases would serve as the basis for implementing analogous solutions in the field of mental health. A possibility of preclinical detection of dementia will be presented, which last but not least, will be reflected in the length of survival and quality of life. The monitoring of antipsychotic therapy with measurements of adverse drug reactions will also be set up and will enable the correction of dosage and replacement of therapy. With this, impact will be made on the quality of treatment, shortening of hospitalisation and possibility of outpatient management, which is cheaper than hospital treatment.

Measurements of the autonomic nervous system (ECG, EMG, PGR, pulse, breathing etc.) cover a considerable portion of needs in the management of the most common physical diseases. The application will cover a large portion of the areas of internal medicine, neurology and mental health (e.g. measurements of the stress state). In a mutual feedback loop, routine activities will encourage the development of technological and biomedical professions. Sensors for data capture will need to be improved, along with telecommunications connections and programme tools (intelligent systems for the analysis and quantification of large amounts of data), and they will need to be harmonised with the development of the biomedical profession and the organisation of health care activities (data transformation, suitability of data collections). The entire system will also need to be upgraded (i.e. its biomedical and technological portions) to serve the needs of disease management. From this, it is possible to recognise the potential for permanent cooperation and continual mutual collaboration which may perhaps shape new professions and intersectorial sciences that will require the participation of several faculties.

2. Review of the global situation

In Europe, pilot telemedicine or telecare systems have already been implemented in the majority of more developed countries. In Croatia as well, Ericsson Nikola Tesla is trying to penetrate with its pilot project for telemedicine, which for the time being is still largely financed by itself alone. Europe invests into infrastructural activities that are necessary for the implementation of telemedicine, such as investments and incentives for building broadband internet networks, financing of research and development projects with the topics of telemedicine and e-health, encouraging the association of relevant experts into excellence networks, encouraging standardisation in this field and informing of the public and politicians about the urgent necessity of setting up telemedicine platforms. The total overview of activities within the framework of 6 OP during the period of 2002-2006 is given in the document “eHealth portfolio of FP6 projects”http://ec.europa.eu/information_society/activities/health/docs/publications/fp6upd2007/fp6intro1.pdf.A few of the current telemedicine applications and projects which are related to our application, along with the employed organisational and technological solutions, are presented below.

Examples of functioning commercial systems:

CardioNet (http://www.cardionet.com/index.htm) is a commercial association with headquarters in the US, which offers telemetric capacities for improved cardiological monitoring over longer time periods (Mobile Cardiac Outpatient Telemetry™ (MCOT™)). The ECG signal meter consists of four electrodes wired to signalling electronics and a transmitter for wireless data transfer to a personal terminal, which analyses and displays measurements. Its initial product range was upgraded with modern analysis of ECG measurements, including real-time processing (beat-to-beat), automated detection of arrhythmia and wireless transmission of ECG signals to a diagnostic centre. Data transmission is either done via the user’s telephone, or a device with an integrated interface is offered for transferring data via the mobile network. They claim to be able to detect rarely occurring arrhythmia which is often not

discovered by 2-3 day Holter monitors. They also claim to help reduce mortality and make like easier for infirm users by enabling quicker diagnosis and intervention, primarily for patients with heart disease. After finishing its use, the user may return the device simply by mail. In addition to their basic activities, they also offer patient education, consultants who find the financially most favourable solutions for each patient and also a permanently accessible technical and medical expert for customer support.

Card Guard (http://www.cardguard.com/newsite/index.asp) is a similar company with headquarters in Switzerland. Its product range is broader, as it can monitor patients with different diseases and also healthy people. It offers innovative telemedical technologies for monitoring of at risk and chronically ill users (cardiology, high blood pressure, diabetes, pulmology, pregnancy and gynecology) and for those who need home care. Its product range is adapted to patients and to other wellness publics. Its technical solutions are similar to those from the CardioNet system, but they offer many more options. Its apparatus for wellness use called HealthePod™ is very interesting. It is adapted to simple personal use with a small display and a USB port or Bluetooth connection for storing measurement results on a PC, as well as for internet use. It enables the monitoring and control of 10 health or fitness-related parameters, such as: single channel ECG, body weight, calorimeter, stress analyser, etc. This company also offers a series of other services which help users choose individually tailored services.

Examples of EU projects:

M-POWER (http://www.sintef.no/Projectweb/MPOWER/) is one of over eighty projects financed within the framework of FP6 IST and FP7 competitions for tenders in the fields of e-health, e-Inclusion and e-accessibility. Its basis purpose is to provide the development of freely accessible SOA software for support to the elderly. It is interesting because within the framework of this project several pilot studies have been performed in Norway, Austria, Poland and the Netherlands about the effects of the proposed solutions on the health and activity of the elderly, about the degree of acceptance of new technology by the users and about other sociological aspects of telecare. Solutions have been proposed that are in line with the smart house concept and include the aspects of privacy and data security, appropriate information models and applicability of offered solutions. They comply with existing standards in the field of applications in e-medicine, such as ISO, CEN TC251 and HL7 (http://www.hl7.org/), and the recommendations of the European Association of Homes and Services for the Ageing (EAHSA).

Doc@Hand (http:// services.txt.it/docathand/ ) is an advanced platform produced within the framework of FP6, which enables simple access to various medical data: patient files, similar clinical cases and potential additional information which allows telemedicine and telecare medical staff to have access to geographically dispersed data which may be scattered in various institutions. Nowadays, such work methods are is indispensable as they support cooperation among professionals via the use of modern information technology and thus increase the quality of diagnoses and level of knowledge of professional staff. As part of this project, the problem of data security and access was attempted to be solved as much as possible. A series of software tools were developed which help medical staff in their work, as they shorten the time to diagnosis, reduce the costs of care, help them collect and process existing medical knowledge and contribute to better decision making while at the same time providing for the security and privacy of patient data.

Examples of projects focused on body sensors:

Biomedical Wireless Sensor Network Project (http://www.bwsn.net/tiki-index.php) is a nonprofit consortium which researches all aspects of the use of body sensors, from their sociological and psychological acceptability, security and operation method to technical details, such as wireless operation, communication protocols, energy consumption etc. The project is focused on the use and integration of existing systems, with upgrades for security and effectiveness, as well as wireless use. They also develop the business aspects of telemedicine and research possible cooperation models between partners in the project. An example of the use of sensors in cardiac surgery on a beating

heart was shown by the project team on YouTube, see:http://www.youtube.com/watch?v=Zxqj1BcBpIg&NR=1.

Body Sensor Networks, Yang, Guang-Zhong (Ed.) - Cambridge University, 2006, XXVIII, 500 p. 275 illus., 32 in color., Hardcover, ISBN: 978-1-84628-272-0. This project provides wireless connection between motion sensors located on various parts on the human body.

3. Description of technical implementation of the sensor portion

The basic technical solutions employed in our telemedicine system proposal, which is also summarised from existing systems, are shown in Figure 1. The upper part of the figure shows a telemedicine system with its individual component units and mutual data connections. Measurements done on the managed person, which are obtained with the use of body sensors, serve as the source of data. We find it to be especially important that these sensors are designed in such a way as to make them acceptable to the managed persons and to cause the least possible interference with their activities; they also need to be trustworthy from the sociological viewpoint. These two requirements mean that the sensors will be small and light, simple to use, noninvasive and safe, and will mostly have a wireless connection to the personal terminal.

The electronics which are necessary for data capture and transfer will be implemented with the most modern technologies and designed in such a way as to leave them open for replacement with ever new technologies. For example, it will be possible to replace the wireless Bluetooth transfer medium, which is installed into today’s mobile phones, with future technologies having significantly lower energy consumption, without any major problems. In addition, a collection unit is planned, which will collect sensor data and will serve for potential local collection of captured data from several wireless electrodes located close by (ECG, EEG, movement etc). This unit will enable optimal adjustment of energy consumption, speed of transfer and electromagnetic field strength on the body. In Figure 1, it is shown with the blue circle on the body of a system user.

Energy consumption will be reduced using other innovative methods. For example, instead of a standard 12-channel ECG, only 3 channels will be transferred, from which the standard 12-channel ECG will be approximated in a personalised manner, optimally for each patient, or the breathing rate signal will be calculated from ECG sensors, thus reducing the number of necessary sensors. Sensor data will be processed locally in order to reduce the necessary transfer bandwidth and consequential energy consumption, e.g. in a “smart” electrode, the heart rate will be calculated, chemical anomalies will be detected, data condensation procedures will be used etc.

The captured and partially processed data will be transferred to the personal terminal either directly or via the above-mentioned sensor data collection unit. The mobile phone, personal computer, or especially adapted terminal for the elderly or another similar gadget will usually serve as the personal mobile terminal. Its role will be triple: it will serve for local presentation of measurements, either to advanced users or to doctors who will visit the patient, for example; it will also provide more demanding local processing of measured results (e.g. detection of dangerous states, data condensation, simple communication interface with the patient), as well as serve as a communication interface with transfer routes to the Communication and Operative Support Centre (KOPC).

The Communication and Operative Support Centre can be connected to personal user terminals via all possible wireless communication options, such as the mobile and fixed telephony network, internet, optic connections etc. At the centre, a database will be set up for all users. There may be users who have entered the system on a voluntary basis for various reasons (infirmity, sports, personal safety), those who will be included in the system by a doctor due for the needs of health care, diagnosis or treatment, and users who may be included by an authorised person in the case of emergencies (urgent treatment, injuries, ambulance staff). The database design will be taken from the existing database of persons included in health care insurance, with special emphasis on ensuring data security and the

reliability of operations.

In addition to the user database, software to support professional medical staff in monitoring of the users will also be installed in the Operative Support Centre. This refers to display programmes and diagnostic data processing software at a level which will innovatively combine computer expert systems supported by existing medical knowledge and the established medical procedures for emergencies with doctor’s decisions on the other hand. This part of the Support Centre will initially fulfill only the minimum set of requirements which will be prescribed by the medical profession. There is a possibility for it to be continually improved, however, as machine learning procedures can be installed into it on the basis of existing cases.

The last function of the Communication and Operative Support Centre will be to provide an intervention system which will be based on current practices, but will be managed much more quickly and in a more organised manner. In the case of emergencies, the intervention time will be shorter, and in addition the condition of the patients will also be continually documented. In the case of monitored persons, doctors will be able to detect changes which the person will not even be able to describe and which cannot be measured during examination at a health care institution. Even in the case of telecare, the system will offer a large amount of already processed cases and will thus have many data and options available to improve intervention procedures.

Figure 1. Conceptual schematic of the telemedicine and telecare system and multimedia communication

4. Description of technical implementation of the multimedia portion

The need for exchanging multimedia data, such as test results, images, files and documents between health care institutions is increasingly more pronounced in medical work. The implementation of the above-mentioned communication will require broadband connections which are already sufficiently developed and are available in all Slovene medical institutions. This part of the system is shown in the lower portion of Figure 1. Medical staff can exchange data via stationary terminals. All exchange of information will be stored at the KOPC. Obstacles to greater informatisation and implementation of the transfer of electronic documents lie primarily in the learned work methods and lack of trust in the credibility of electronic documents. Nowadays, these activities can be handled separately from the system for transferring sensor data, but in the future the two will be increasingly connected. The results obtained at the Communication and Operative Support Centre will also become the subject of exchange between medical institutions. Electronic documents related to tests done for telecare system users will also be essential for making better medical decisions.

In addition to the above-mentioned considerations, the transfer of multimedia information will also be necessary in telecare. For example, videos and spoken consultations will often help users feel better and will provide advice on further necessary actions. The proposed telemedicine and telecare system will therefore be designed in such a way as to enable the transfer of multimedia data. These will be transferred from the personal terminal, which in this case will require greater bandwidth of the communication channel leading to the Communication and Operative Support Centre. The methods for storing and processing data will not be the crucial points of our research and development, but they will certainly be taken into account in the conceptual design of the proposed system.

The Communication and Operative Support Centre will be organised in such a way as to also enable the transfer of broadband information. Appropriate communication and software interfaces will be developed, which will serve as support, provide care for the users and at the same time facilitate the exchange of electronic documents between medical institutions.

5. Management levels

The entire system can be formally presented as a distributed database, which can be managed in various ways. Several possible versions of telemonitoring are possible:

- Single level telemonitoring: One system for the entire Slovenia, which will not be bound to health care centres (separate diagnostics system). Effective linking between health care institutions and telemonitoring will also be necessary.

- Two-level telemonitoring: Telemonitoring can be bound to several selected health care institutions or to all institutions which provide services to the local population. Local centres are mutually interconnected and they are also connected to the main centre, which is located near the Ljubljana Medical Centre. Such organisation requires more staff, but at the same time it more effectively relieves the medical staff.

The proposed solution will be bound to the existing network of Slovene medical institutions, which provides good coverage of the entire territory of Slovenia. The interconnectedness of the institutions will also be taken into account, as it will be especially important for the exchange of sensor multimedia data. Figure 2 shows the geographical distribution of Slovene health care centres and hospitals. The final decision on the choice of the management style will be adopted in the finishing portion of the period of the COE’s activity on the basis of experience, measurements and optimal use of financial and human resources.

Figure 2. Geographic distribution of Slovene health care centres and hospitals.

6. Examples of using the telemedicine and telecare system in medical applications

As was described in previous sections, the telemedicine and telecare infrastructure system will be implemented in a general version and with open tools, so that it will be suitable for use in all areas of medicine. In the phase of system development, only a few test examples, which are stated in this section, will be specifically tested and evaluated. The majority of this work will be implemented within the scope of the DS 2 work package titled Medical research and applications.

6.1 Telemedicine in psychiatry

6.1.1 Telemedicine and early detection of mild cognitive disorders in the prevention of dementia

Dementia occurs in 5% of people over the age of 65 and its prevalence increases with age. It is five times more common in 80-year-olds than in 70-year-olds and it is estimated that in 2030 at least 20% of the population over the age of 65 years will have this disease. The dementia syndrome is characterised by an overall deterioration of cognitive functions, as well as by changes in personality, motivation and mood. This disease gradually makes the patient completely incapable to perform even the basic daily activities.

The stage between normal cognitive functioning of the elderly and dementia is the stage of mild cognitive impairment (hereinafter MCI). It may affect several cognitive areas, such as attention,

cognitive abilities, episodic memory, language and executive abilities and it also involves a 4 to 5 times greater risk for the development of Alzheimer’s disease. 80% of individuals with the diagnosis of MCI develop Alzheimer’s disease within ten years of diagnosis. While the average annual rate of deterioration due to Alzheimer’s disease in the MCI population is 10-15%, the rate for healthy elderly people is only 1-2%. Early detection and timely help to individuals with MCI may slow down the degenerative processes and enable these patients and their relatives to have a higher quality of life for a longer time.

6.1.2 Telemedicine and monitoring of adverse drug reactions in the treatment of depression

When antidepressants are used, vomiting, nausea, diarrhea, convulsions, tremor, headache and vertigo may appear, and some patients also experience sedation. In some patients, SSRI antidepressants alter glycemic control, which necessitates immediate intervention (more frequent measurements of blood glucose levels and quick dose adjustment of antidiabetic medication). During acute treatment, these patients often experience weight loss, while during maintenance treatment weight gain is more common. Some antidepressants may lead to an increase in blood pressure or a need to adjust antihypertensive therapy. Due to possible bone marrow depression, doctors should pay attention to detect fever, sore throat or any other infections in their patients. Immediate determination of full blood counts is also necessary. Antidepressants occasionally increase the plasma levels of cholesterol and triglycerides; therefore, these metabolic parameters also need to be checked in high-risk patients. Comorbidity of depression with physical diseases is very important. Depression is a risk factor for physical diseases and there is also a link between cardiovascular diseases and depression, since depression is an important risk factor for the development of coronary disease. Compared to people not suffering from depression, depressive patients have four times higher rates of myocardial infarction. Within the first 6 months of myocardial infarction, mortality is also three to four times higher in depressed patients. Depression appears in 30 % of patients with diabetes Type 1 and 2. It causes more obesity, more complications, higher health care costs, worse glycemic control, less physical activity, worse patient compliance (concerning taking of medications) and lower quality of life. It is also common in the case of tumours, cerebrovascular diseases, thyroid diseases and many other diseases. Due to comorbidity, the treatment of depression is more difficult and the possibility of adverse effects and damage to the patient’s health is greater. In the DS, other types of treatment for depression will also be introduced e.g. cognitive psychotherapeutic management.

6.1.3 Telemedicine and monitoring of adverse drug reactions in the treatment of psychoses (Telepsydrugmonitor)

Antipsychotics are indispensable in the treatment of psychoses. All, but primarily atypical antipsychotics, may increase blood glucose levels and predispose the patient to the development of diabetes. All patients receiving atypical antipsychotics are continually monitored for the signs of development of diabetes, obesity and hypercholesterolemia. In the event of increased values of these parameters, the medication should be switched. The use of some antipsychotics leads to QTc interval prolongation, which is also a risk factor for ventricular arrhythmia, torsades des pointes or polymorphous ventricular tachycardia, which is characterised by QRS complexes of varying amplitude. It may be asymptomatic or may cause dizziness, palpitations and syncope. In rare cases, it progresses to ventricular fibrillation with cardiac arrest and sudden death. It usually appears when the QTc interval exceeds the level of 500 msec. Antipsychotics also cause other ECG changes, such as atrial fibrillation, P-wave increase, T-wave changes and complete or partial bundle branch block. Regular ECG control is often inevitable, primarily with high risk patients, because they may experience orthostatic hypotension.

Extrapyramidal side effects (EPS) are important primarily with the use of classical antipsychotics, but they also appear with atypical antipsychotics. They are often unpleasant and incorrectly diagnosed, and they lead to functional impairment and poor patient compliance with treatment. Patients should be monitored for their occurrence and for the appearance of tremor, salivation, Parkinsonism, acute

dystonia and dyskinesia, as well as for the appearance of tardive dyskinesia, which causes an extreme disability for the patient.

More or less all antipsychotics lead to a certain degree of weight gain after about 4 to 12 weeks of treatment. It should be noted that changes in body weight also depend on the initial body mass index (BMI).

The threshold of excitation for epileptic fits (convulsions) is most often reduced by classical antipsychotics and clozapine. The frequency of convulsions depends on the dose level of the medication, and they are most often caused by a quick increase in the dose or sudden withdrawal of the medicine. Such patients required regular controls and monitoring of the efficiency and safety of treatment.

6.2 Telemedicine and telecare in private practice

Two projects have been envisaged for the telemedicine system, i.e. community psychiatric management and long-term home care for chronic psychiatric patients. The first project will be conducted as part of residential and other communities of psychiatric patients for whom individual management is well planned, while the management of the entire patient community is not. Since such community therapy has a significant impact on residential quality and there are too few professionals to do it personally because of growing needs, a centre will be set up from which psychiatrists, psychologists and work therapists will be linked via IC technologies to residential and other communities in the territory of the entire country and they will perform group management with respect to the schedule which will be determined by community coordinators.

In the second case, we will focus on the population of chronic patients. The patient and the doctor will be connected using information and communication technology with a secured system (via password) and will be able to communicate with each other and see the joint data sets. Measurements related to the disease will be done and recorded at home by the patients themselves or with the help of a visiting nurse. The measurable parameters will thus include: body weight, blood pressure, blood counts, lipidogram, body temperature, prothrombin time, severity of pain, degree of depression.

The following positive effects are expected in patients: physical and psychological relief, greater feeling of security, greater possibility for expression, better organisation of data related to the disease and thus better therapy, reduced waiting room stress, better control of the disease, better functioning of the patients over the long term (work population – shorter sick leave, older population – better functioning, greater independence from external assistance), possibility of partnership which patients will certainly be able to feel. For doctors, the following positive effects are expected: lower stress due to better review of data, well-organised appointments, awareness of acute problems prior to personal contact, shorter reaction times for pathological deviations of data, direct cooperation between doctors managing the same patient etc. In addition, various specialties will have access to joint data on the patient’s several chronic diseases.

6.3 Telemedicine and telecare for cardiac patients

In terms of health care for cardiovascular patients, it is necessary to master the fields of telediagnosis, remote monitoring and teleconsultations. For this purpose, modern information and communication systems need to be developed that are distinguished by speed, safety and reliability. Research and development projects of the Centre of Excellence for the period from 2009 to 2013 for the Medicor MC will cover the following two areas:

Integration of recording systems for the needs of telediagnostics and teleconsultations

a) Problem description

Currently, hospitals use various systems for capturing videos and images. Each manufacturer of diagnostic equipment (endoscope, ultrasound, cameras in surgical theatres) has its own system for video and image capture. These systems differ in the standard of video recording, storage method, storage medium, archiving, access and reviewing tools. Therefore, various systems may be appropriate within departments or within a single health care institution, but they may no longer be adequate when information needs to be exchanged between various health care institutions.

All of the above differences represent an obstacle to more comprehensive and quicker diagnosis and also to teleconsultations about patients with cardiovascular diseases. b) Expected study results

The results of these studies will comprise a safe and reliable system for storing, reviewing and organising of images and videos. Teleconsultations with various doctors will also be possible.

Test case 1 - Medical multimedial data and doctor-to-doctor assistance and support.

c) Long-term advantages for users (patients, health care and other institutions for patient care)

With the introduction of this system, the following advantages will be manifested over the long term:

The technical capabilities for data capture, patient monitoring, analysis and/or comparison of disease progress between individual patients will need to be provided,

The technical capabilities for potentially getting a second opinion about individual cases will also need to be available,

An appropriate database on various typical and less typical diseases will have to be prepared for both educational purposes and for teleconferences,

Materials for later review and potential consultation of verification of diagnosis will need to be procured.

Setting up of a platform for secure transfer of data and information in various areas of telemedicine

a) Problem description

In exchanging patient data, care should be taken to make sure these are not leaked from health care institutions, and at the same time records should be drawn up to which external associates or partners will have access.Data transfer also needs to be reliable, so that information will be available on time, because in certain cases the time component can be decisive.The safety of information-communication systems will need to be handled comprehensively. This should be done in health care institutions, as well as regarding their interconnections and

links to final users.

b) Expected study results

For health care institutions and their associates or partners performing certain types of work from remote locations, it will be necessary to provide safe and reliable connectivity (incl. via redundant VPN links between locations). At the same time, care should be taken to ensure appropriate prioritisation and classification of such transmissions. Appropriate verification and recording of access by remote users should be guaranteed.At health care institutions, safe delimitation to separate segments should be ensured and policies should be implemented that specifically determine who, from where and when will be allowed access to certain information sources. In addition, provisions should be made to ensure appropriate protection which will enable safe transition from the local network and any special internal segments to the Internet.

c) Long-term advantages for users (patients, health care and other institutions for patient care)

Savings in treatment costs, fewer visits to various specialists, quicker diagnosis; the information will be accessible always and from anywhere.Guaranteed supervision to ensure that patient data are not leaked from health care institutions.Quicker diagnosis because all patient data will be collected and accessible in electronic form.

6.4 Telestroke

The management of patients with cerebrovascular diseases is a multidisciplinary undertaking and it requires new organisational approaches which include emergency management in prehospital environments, as well as changes in management within specialised hospital setting and early management by multidisciplinary rehabilitation teams. The role of the health care system in the management of stroke patients is very important. The health care system needs to be adapted and its functioning has to be made more effective. The level of emergency in this case is the same as with acute coronary syndrome or severe head injuries. This principle was adopted in 2000 by the International Liaison Committee on Resuscitation (ILCOR). The time from the onset of the symptoms and signs of stroke to its treatment should be as short as possible. This can be done only through appropriate logistics, which need to be specifically adapted to each Slovene region, taking into account the capacities of each individual region.

The final effect of treatment of acute ischemic stroke using recombinant tissue plasminogen activator depends on the time between the onset of disease and receiving of the medicine, which should be shorter than one hour. Many hospitals in developed countries and also in Slovenia do not have 24-hour on duty service that would cover the area of cerebrovascular diseases. Therefore, there is no possibility for appropriate treatment of patients with acute stroke. Correct diagnosis is equally important.

A form of telemedicine called Telestroke is one possibility for reducing the total time of medical care and determining the correct indication for such treatment in patients with acute ischemic stroke. Hospitals which do not have an appropriately educated neurologist who is specialised for the area of cerebrovascular pathology or which have no neurologist at all will be able to transfer the neurological status and computer tomography images to the relevant centre via video link. This procedure will enable a greater number of patients to have access to appropriate treatment, and will reduce the time until the medication is administered, which would otherwise have been used for the patient’s transport to another, more appropriate institution.

Many studies have shown that the patient’s neurological status can also be assessed via videoconferences (National Institute for Health Stroke Scale – NIH SS) and thus the indication for

treatment with rt-PA can be set (5-7). In this way, hospitals which have a CT will be able to assess the suitability of such treatment and to monitor it if necessary (positive experience from the Telemedicine Pilot Project of Integrated Stroke Care – TEMPiS).

Similar projects can be found in other countries (USA, Canada, France etc.). In the USA, treatment of acute ischemic stroke can be done even in ambulances which also have computerised tomography apparatuses. As with any other technological progress, Telestroke also has its downsides. These are manifested in terms of the reliability of work, acquisition of permits to perform such treatment, and issues of privacy and trust between centres.

Test case 2 - Telemedicine and telecare for postoperative monitoring and rehabilitation.

With the exception of the Ljubljana Medical Center, the Maribor General Hospital and the Celje General Hospital, Slovenia does not have guaranteed 24-hour presence of a neurologist in a hospital, and some hospitals do not even have a neurologist employed. The same applies to the 24-hour presence of a radiologist or neuroradiologist (they are only on stand-by). With the construction of a new Neurology Clinic in Ljubljana, a new feature could be introduced in the field of stroke treatment, called Telestroke. The monitoring centre will be the Clinical Department of Neurology, the Stroke Unit. This unit will have a neurologist constantly present and available. He/she will be trained to work with stroke patients and will also be skilled in computer use. A neuroradiologist will also be available (24-hour on call duty by a neuroradiologist is desired). Doctors from all Slovene hospitals who do not have the help of a neuroradiologist available on a 24-hour basis or have no neuroradiologist at all will thus be able to consult a neuroradiologist (not only regarding stroke) and a neurologist.

6.5 Early post-hospitalisation monitoring of surgical patients

Surgical patients should be monitored after surgery to ensure timely detection of early postoperative complications. Depending on the type of surgery, complications can appear during a period of about 14 days after surgery. Until recently, such patients were monitored in hospitals. However, the trend of current health care policies is to shorten the duration of hospitalisation as much as possible. This is possible only if the detection of early postoperative complications at home or in another, nonsurgical institution is ensured. Nowadays, the health care system is not properly prepared for this and because of poorly adapted home care service and the doctors’ inability to regularly monitor such patients at home, pressure on specialist outpatient office has increased and the number of control examinations after procedures is on an increase.

Care for surgical patients following surgical procedures can be performed in the conditions of telecare. This would be feasible by observing specific measurable and sufficiently sensitive parameters with which one could monitor the patient’s health status remotely and detect the appearance of early postoperative complications on time. These parameters would have to be such that they would enable

the decision on whether following discharge from the hospital patients could be managed at home by providing instructions, and whether timely professional interventions could be provided for them at home or in a hospital.

As part of the project, it will be necessary to find out about the most common and important early postoperative complications for the majority of surgical procedures. In the initial phase of participation in the COE-TT, specific and sensitive parameters which require monitoring will need to be determined. A method for sensing these parameters will need to be found as well (e.g. measurement of body temperature and local temperature using sensors, extent of swelling, assessment of pain according to the VAS, etc. by using surveys, photographs, videofilm etc.). These parameters will then be tested individually and all together on a group of surgical patients in a hospital. During project implementation, the above study will be repeated on a larger group of patients, at home after their early discharge from hospital. In the event of successful realisation, this could mean safe early discharge of surgical patients.

6.6 Introduction and monitoring of the telecare system for the elderly

The implementation and monitoring of the telecare system will be done with the support of staff having experience in the fields of work therapy, nursing, physiotherapy, sanitary engineering and health care education. We will participate in determining the needs for telemedicial tools, accessories and devices which are suitable for the control of bodily functions and for planning further rehabilitation procedures. Health is not only the absence of disease, it is a state of complete physical, psychological and social wellbeing and thus constitutes a wider social phenomenon. Turner (1995) defines it at three levels: the systemic or macro level (politics, laws), professional level (doctors and other medical personnel) and personal level (individuals). This structure is reflected in the modern understanding of health care groups – on the one hand it relates to the nature of relationships and on the other to emphasis on the inclusion of users. As has been proved by many studies, one of the constitutive factors of the quality of care for health is above all the quality of participation of key actors. A trend of establishing partner interdisciplinary relationships is notable.

The focus will be primarily on the elderly population, i.e. persons who are 65 years of age or over, and solutions are planned to be proposed that will enable the elderly to remain active in their home environment for as long as possible. It is estimated that at least half of the elderly encounter problems in everyday activities, and falls and injuries also represent a major problem. Procedures and tools which prevent sudden falls and ensure effective interventions when they do happen will be designed and evaluated. At the personal level of perceiving health and the quality of life, the capacity for physical activity is above all noticeable. In this respect, it is important to know the effects of various physical factors (heat, pressure, light, gravitation, electricity and magnetism) on physiological responses and the physical capacity of humans, as well as the possibilities of their use for the treatment of musculoskeletal, respiratory and cardiovascular injuries, diseases and impairments. Focus will also be on new areas, such as monitoring of pregnant women and babies, where experience from the field of midwifery will be employed.

Test case 3 - Urgent alerts and emergency medical assistance and support.

Balance is one of important internal factors and with its assessment it is possible to predict the risk of falls in the elderly. This is because ageing leads to a notable deterioration of all systems which contribute to the effective maintenance of balance. For example, the number of hair cells in the vestibular system decreases and so it becomes less reliable. The efficiency of peripheral vision also decreases and this has a significant impact on the stabilisation of the body’s oscillations. Similar considerations apply to the somatosensory system. Sensitivity to vibrations and feeling for the position and movement of the joints are also significantly decreased. Furthermore, the density of innervation of the skin in the area of the foot and sole decreases. The neuromuscular system also changes with ageing. The muscle mass decreases, as well as power and capacity. In the proposed research and development project, the objective is to seek mechanisms which are responsible for reduced capacity and, on the other hand, to find effective, quick and inexpensive clinical tests to predict the risk of falls in healthy elderly persons, as well as in those with diseases of the nervous or locomotor system.

The introduction of new procedures will require cooperation from work therapists at user’s homes, as well as nurses from the home care service. We will participate in the education of the health care staff and telecare system users. Tests will be made to find out how remote assistance and learning could be implemented within the framework of the planned system. The effectiveness of the developed tools will be evaluated from the viewpoint of their functionality and regarding their acceptability for users. The degree of acceptance of these tools among medical personnel, the level of understanding of their functioning and the ability to exploit their functionality will be established. For users, it will also be important to find out how they handle these tools and what their effect is on the users’ self-image and position in the community. We will participate in the improvements of the tested methods and in improving the training and education of users and health care personnel.

Infrastructural system of telemedicine and telecare will, as described in previous chapters, be implemented in general and through open tools, so as to be propar for use at all fields of medicine. In the phase of system development we will test and evaluate only few test cases listed in this chapter. Majority of this tasks will be implemented in frame of workpackage DS 2 Medical research and applications.

6.7 Telemedicine for rared diseases – medical genetics

The main political challenge in the forthcoming years dealing with demographic changes, economy globalization and human needs, would be the development of new models of sustainable welfare - those accompanying people throughout their entire life, especially if disabled. Among them, there is a special category in need for characteristic attention: patients with genetic diseases, rare diseases. Rare diseases are chronic, progressive, degenerative and life-threatening diseases, which often negatively affect the quality of life. There are about 30 million EU citizens with this problem. Among them, 80% is of genetic origins. There is a special need in building the community networking and public health policy for rare and genetic diseases.

Also, genetic factors play an important role in a variety of conditions ranging from “classical” genetic disorders, cancer, complex diseases, and response to drugs (pharmacogenetics, pharmacogenomics). Currently, it is possible to accurately diagnose an inherited disorder in affected individuals, to identify a carrier among family members and to reveal at risk individuals for complex diseases. However, although there has been a tremendous progress in the understanding the basic principles of diseases, it has not coincided with potential improvement of patient care in both inherited and complex diseases.

Telemedicine enables easier access to health care, improves the quality of life of patients with chronic genetic diseases through teleconsulting, telediagnostics, telemonitoring. The most important part of genetic evaluation of a patient with genetic problem is genetic counseling – an informative, educational contact between the professional and the patient based on individual approach, communication and respect. Telegenetic medicine is the most suitable way for improved access to genetic service in an underserved area. It promotes and improves the quantity and quality of genetic services, knowledge transfer to the community of genetic counseling providers and consumers. In addition, telemedicine could be implemented also in call centers, net centers for patients and professionals, electronic contacts with patients and colleges, and video conferences for professionals.