Tracking positive beliefs and privacy concerns will shape My Health Record

A new examination of previously published data on consumer and provider attitudes towards the PCEHR, now known as the My Health Record, suggests that positive beliefs about the value of having a PCEHR and the importance of individual control over the privacy and content of the record are the two key factors that will shape the future of the system.

The new analysis is based on data collected before the system went live, which showed that a slight majority of consumers appeared ambivalent or negative about the PCEHR, views that the researchers argue might stem from not knowing the mechanics of the system very well.

“Without demonstrating to people the benefits of having a PCEHR, the potential for broad uptake and use of the system will be difficult to achieve, and the large financial investment made so far in the system may only be used by a subset of consumers who are curious about their health record,” they write.

The study, by Elin Lehnbom of the University of Sydney and Heather Douglas and Meredith Makeham of the Centre for Health Systems and Safety Research at Macquarie University, looked at previously published surveys, including Dr Lehnbom's own qualitative study undertaken in 2010 and published in 2012, just before the system went live.

A follow-up analysis of the data was published in 2014.

That survey found that few consumers were aware of the existence of the system, although once they heard about it the majority supported its implementation. Another study published in 2014 by Lynda Andrews and colleagues from the Queensland University of Technology, which found that the perceived value and risk associated with the PCEHR were the two most important variables explaining attitudes. However, the researchers say that as this survey used questionnaires that were not specifically developed for the PCEHR, its use in examining the attitudes towards the PCEHR was limited.

The new analysis of the researchers' previous survey was aimed at establishing what constituted the key attitudes towards the PCEHR, using a factor analysis. The researchers divided this into two major categories: positive beliefs and privacy concerns.

The majority of the sample (58 per cent) had below the average scores for positive beliefs, but the researchers say this is probably due to the fact that few were aware of the benefits of having a PCEHR.

On privacy concerns, the split was 53.6 per cent who were less than concerned about their PCEHR being insecure, with 46.4 per cent more concerned.

“Measuring these attitudes over time not only has the potential to identify population-level changes in attitudes that might affect uptake but also might assist policymakers to identify individuals in need of more targeted educational interventions to encourage their use of the PCEHR,” they write.

They also speculate on reasons why healthcare providers have been resistant to adopting the system. Department of Health figures released last year showed that while 20,000 PCEHRs were viewed per month by consumers, healthcare providers were only having a look at documents uploaded by another provider about 140 times a month.

The researchers proffer potential explanations for this, including that healthcare providers perceive they know everything they need to know about their patients, concerns over what many call a “clunky” system, the risk of litigation if they access the PCEHR but miss important information, and a lack of evidence that using the system will improve healthcare delivery and outcomes.

They also report interesting results from questions about whether consumers preferred an opt-in or opt-out model, which is timely considering planning for the first opt-out trials is getting under way.

According to the original research, there is little perceived difference between an opt-in and opt-out model for the PCEHR.

The researchers say the promised education campaign needs to be better targeted to achieve greater awareness about the PCEHR to allow individuals to make an informed choice whether to have one or not.

There is also the warning from the UK's experience with the summary care record (SCR). Research led by Trish Greenhalgh of Queen Mary University of London, now at the University of Oxford, showed that an opt-out consent model was relatively ineffective.

Professor Greenhalgh's research showed that despite a letter being sent to 95 per cent of the population, only one in seven people recalled receiving it.

The Australian researchers argue that for healthcare providers, future efforts to improve to uptake and usability of the PCEHR should focus on better presentation of data, and on finding evidence of better health outcomes.

Positive beliefs and privacy concerns shape the future for the Personally Controlled Electronic Health Record was published last week in the Internal Medicine Journal.

Posted in Australian eHealth

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