Nationwide citizen access to their health data: analysing and comparing experiences in Denmark, Estonia and Australia

Abstract

BackgroundMost countries face an ageing population, increasing chronic diseased, and constrictions on budget for providing health services. Involving patients in their own care by allowing them access to their patient data is a trend seen in many places.MethodsData on the type and level of access citizens have to their own health data in three countries was gathered from public sources.ResultsData from each individual country is presented and the experiences of Denmark, Estonia and Australia are examined whilst similarities and differences explored. The discussion adopts a citizen-centred perspective to consider how the different e-portal systems support, protect and structure citizen interactions with their own health data in three key areas: Security, privacy and data protection; User support; and Citizen adoption and use.ConclusionsThe paper highlights the impact of opt-in/opt-out approaches on citizen access and the lack of a structured approach to addressing differences in citizen health and e-health literacy. This research also confirms while current data provides detail on the availability and use of personal health data by citizens, questions still remain over the ultimate impact on patient outcomes of these initiatives. It is anticipated the insights generated from the three countries experiences, supporting citizen access to their health data will be useful to improve these initiatives and guide other countries aspiring to support similar initiatives.

Half of the Finnish population accessed their own data: comprehensive access to personal health information online is a corner-stone of digital revolution in Finnish health and social care

“…Finnish health professionals have positive expectations about the new PAEHR [40]. Similar results have been reported in other Nordic countries, such as Sweden [8,[28][29][30][31]41] and Denmark [2,4].…”

“…A nationally shared, widely used PAEHR has powerful symbolic meaning [15] and they have been developed, launched and used in many countries, including Finland [4]. However, the PAEHRs are rarely nationwide [16,17,41].…”

“…Use of digital online services, such as the PAEHRs, can enhance citizens' or patients' control of personal space, alleviate anxiety without any negative impact [1]. Involving patients in their own care by allowing them an access to their PAEHR data is a trend seen in many places [4]. Easy access to personal health information has long been on the 'wish lists' of patients and their advocates [5][6][7][8]27].…”

“…Patients are offered access to their own health data on a national level only in a few countries, such as Australia, Canada, Denmark, Estonia, Finland, France, Iceland, New Zealand, Norway, Scotland, Singapore and Sweden [4]. Easy access to personal health information has long been on the wish lists of patients and their advocates, and modern health information technology, internet and secure patient accessible electronic health records (PAEHR) may dramatically increase possibilities for patients' access to their own data [5][6][7][8].…”

“…Electronic patient journals have been available for patients since 2012 but each region decides what information is shown. Denmark is an early adopter of health information technology [2] and, launched the Danish national PAEHR sundhed.dk in 2003 [4] and the E-Journal national repository of record information from all public hospitals in 2007 [32].…”