The following article appeared in the current issue of the Journal of the American Medical Informatics Association.
J Am Med Inform Assoc. 2011 July; 18(4): 515–522.
Personal health records: a scoping review
N Archer,1 U Fevrier-Thomas,1 C Lokker,2 K A McKibbon,2 and S E Straus3
1DeGroote School of Business, McMaster University, Ontario, Canada
2Department of Clinical Epidemiology and Biostatistics, McMaster University, Ontario, Canada
3Keenan Research Centre, University of Toronto, Ontario, Canada
Correspondence to Norm Archer, DeGroote School of Business, McMaster University, 1280 Main St West, Hamilton, ON L8S 4M4, Canada; Email: firstname.lastname@example.org
Received January 13, 2011; Accepted April 30, 2011.
Electronic personal health record systems (PHRs) support patient centered healthcare by making medical records and other relevant information accessible to patients, thus assisting patients in health self-management. We reviewed the literature on PHRs including design, functionality, implementation, applications, outcomes, and benefits. We found that, because primary care physicians play a key role in patient health, PHRs are likely to be linked to physician electronic medical record systems, so PHR adoption is dependent on growth in electronic medical record adoption. Many PHR systems are physician-oriented, and do not include patient-oriented functionalities. These must be provided to support self-management and disease prevention if improvements in health outcomes are to be expected. Differences in patient motivation to use PHRs exist, but an overall low adoption rate is to be expected, except for the disabled, chronically ill, or caregivers for the elderly. Finally, trials of PHR effectiveness and sustainability for patient self-management are needed.
Here is the discussion and conclusion:
Our scoping review has found that a significant amount of research is being done on PHR adoption, use, and satisfaction for various groups of users, with the main focus on providers. There is some evidence for the inclusion of certain functionalities in PHR systems, especially from the patient perspective, as gleaned from the utilities they use most. However, the clinical effectiveness and cost effectiveness of PHR interventions has not been adequately confirmed. From the limited and heterogeneous literature that was synthesized, the following themes emerged:
- Primary care physicians play a key role in the management of their patients' health. Based on our review, we believe that sharing some proportion of their EMR records with patient PHRs can provide patients with useful information that allows them to be positively engaged in health self-management. A key to PHR adoption in North America is therefore rapid and continuing growth in physician adoption of EMRs from its current relatively low rate. In 2008, EMR adoption by primary care physicians was in the range of 24–28% in the USA, and 20–23% in Canada.99 Primary care EMR adoption is likely to have grown considerably since then in both countries, due to provincial subsidies for EMR adoption in Canada, and the implementation of meaningful use requirements and significant allocations to healthcare information technology in the American Recovery and Reinvestment Act of 2009 in the USA.
- Although a number of good quality studies of PHRs have produced interesting results, many of these studies have been physician-oriented. Patients in the studies had access to their information through their doctors' or hospital EMRs (tethered PHRs). EMRs are designed to provide doctors with the functionality and information they need, and their use for patients does not necessarily meet patient needs. Some studies9 12 29 47 74 76 100 included certain considerations of patient-oriented support such as the ability to join communities of interest, general information from high quality internet sites, information from healthcare professionals and internet sites on treatment programs for lifestyle, weight management, support for self-monitoring programs for chronic conditions, etc. But many did not. Until such integrated support is made available to patients, PHRs are not likely to demonstrate their full potential for supporting tangible or intangible improvements in patient health outcomes.
- People with serious chronic conditions, individuals with disabilities, parents with small children, people with a strong interest in maintaining healthy lifestyles, and the elderly or their caregivers are more likely to adopt PHRs. Therefore, although a low overall PHR sustainable adoption rate can be expected, steps need to be taken by developers to improve the performance of PHRs and their long-term benefits for the people most likely to use them. This includes involving potential user groups with specific health self-management needs directly in requirement specification, design, and testing, to ensure that the PHRs match the cognitive abilities of their intended users and thereby support health self-management and disease prevention.
- In a recent review of consumer health informatics, Gibbons et al101 report that applications that provided individual tailoring, personalization, and behavioral feedback had the most significant impact on patient health outcomes. However, research is needed to develop a more detailed understanding of what motivates people to not only adopt but to continue using PHRs. Long-term sustainability of PHR use by patients was an issue that was not mentioned in any of the literature we examined. Sustainability involves not just positive results from factors such as adoption, use, acceptance, satisfaction, and usability, but favorable individual and organizational impacts. This is extremely important if healthcare systems are to avoid the specter of financing apparently successful PHR innovations that are abandoned or under-utilized by patients after an initial flurry of use.
- RCTs are needed to test assumptions about the comparative effectiveness of PHRs on outcomes for various patient populations, using systems designed specifically for patient health self-management and disease prevention.
The objective of this study was to describe existing electronic and paper-based PHR research and to determine whether PHRs can provide benefits to consumers/patients. We found many relevant papers, indicating a generally growing interest in PHR use, but there is much more to be done in tailoring PHRs for patient health self-management and sustainability. Although there is a large amount of survey, observational, cohort/panel, and anecdotal evidence of PHR benefits and satisfaction for patients, more research is needed that gathers evidence to evaluate the results of PHR implementations in the context of works such as the Delone and McLean model of information systems success.98 At this point there is little solid evidence from RCTs or other studies of proven effectiveness in improved patient health outcomes through the use of PHRs. More research is also needed that addresses the current lack of understanding of optimal functionality and usability of these systems, and how they can play a beneficial role in supporting self-managed healthcare.
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The full article is accessible (for free) here:
This is a very useful review indeed and should be read by all interested in the PCEHR.
As I read this what these experts are saying is that “right now evidence that PHR’s make a difference is pretty thin on the ground”.
It also seems pretty clear that when success has been looking like it is happening there has been a EHR with the PHR as an extension of that system.
This is NOT what is planned in Australia and so one can only conclude the PCEHR is a half billion dollar experiment lacking any real evidence base.
Pretty silly that!