Summary
Objectives
To provide a survey over significant developments in the area of linking personal
health informatics and clinical informatics, to give insights into critical advances
and to discuss open problems and opportunities in this area.
Methods
A scoping review over the literature published in scientific journals and relevant
conference proceedings in the intersection between personal health informatics and
clinical informatics over the years 2010 and 2011 was performed.
Results
The publications analyzed are related to two main topics, namely “Sharing information
and collaborating through personal health records, portals and social networks” and
“Integration of personal health systems with clinical information systems”. For the
first topic,resultsarepresentedaccordingtofivedifferentthemes:”Patient expectationsandattitudes”,”Realuseexperiences”,”Changesforcareproviders”,”Barrierstoadoption”and”Proposedtechnicalinfrastructures”.Forthesecondtopic,twodifferentthemeswerefound,namely”Technicalarchitecturesand
interoperability”“and”Security,safetyandprivacyissues”.
Discussion
Results show a number of gaps between the information needs of patients and the information
care provider organizations provide to them as well as the lack of a trusted technical,
ethical and regulatory framework regarding information sharing.
Conclusions
Despiterecentdevelopmentsintheareasofpersonal health informatics and clinical informatics
both fields have diverging needs. To support both clinical work processes and empower
patients to effectivelyhandleself-care, anumberofissuesremainunsolved.Open issues
include privacy and confidentiality, including trusted sharing of health information
and building collaborative environments between patients,theirfamiliesandcareproviders.Therearefurtherchallengesto
meet around health and technology literacy as well as to overcome structural and organizational
barriers. Frameworks for evaluatingpersonal health informatics applications and pervasive
health technology are needed to build up an evidence basis.
Keywords
Clinical informatics - personal health informatics - personal health records - personal
health systems - privacy