View source for Research Agenda for Personal Health Records (PHRs)

These authors reviewed existing PHR specific literature (100 articles derived from a pub med search of the terms “personal health records", "PHR's" from 1950 through 2007), and divided the results into seven categories, four of which present particular research opportunities. These four areas encompassed 41 articles, 21 of which included original primary research.

Although 70 million people in the United States have access to some personal healthcare record, fewer than 10% use the PHR on a monthly basis.  Veterans Administration patients, users of EPIC, and in the near future many subscribers to Blue Cross may have access to a PHR, greatly increasing the patient base with access to PHR's.  Although product development and implementation have received substantial investments, there has been a paucity of investment in the evaluation of or research into PHR's.

'''Function evaluation''' is probably the most important area of PHR research. These functions are generally those of information collection, sharing, exchange, and self-management (with the last two functions having received the most focus). There is a particular opportunity to evaluate the impact of PHR’s on care for patients with chronic conditions, as well as to evaluate the overall value derived from composite PHR systems, bringing together multiple functions.

'''Adoption and attitudes''' should address the fact that physician providers have been generally nonenthusiastic (due to concerns that PHR’s will create additional non-reimbursed work), and well below 10% of users with access to a PHR actually use it on a monthly basis. A set of cancer patients has been shown not to use their PHR’s effectively (although they embraced them warmly).  Research should focus on specific populations, patient level factors (age, education, accessibility…), organizational factors (provider vs. payer sponsorship of PHR’s), modification of provider attitudes, barriers to use by patients and providers.

'''Privacy and security''' represent the population's greatest concern about electronic healthcare applications in general (91% "very concerned"). There are multiple parallels to the privacy and security issues associated with RHIO's. Patient proxies (parents/children, caregivers/mentally compromised wards) present particular difficulties. Trade-offs among privacy, security, and access need to be worked out.

'''PHR architecture''' (the three primary components of data, infrastructure, and applications) are compared to a hub and spoke model, with relative benefits and costs being related to the size of the hub (robust applications at the disposal of the patient) the number of spokes (connectivity to multiple data sources), and the thickness of spokes (completeness of health information sources). Future areas of research include interoperability, relative benefits and costs of different PHR architectural models.

'''Related non-PHR research''' includes use of patient/provider e-mail, patient-generated computer-mediated medical histories.

'''PHR business case''' must address the current issue that incentives for PHR's do not seem to align (at the level of providers, and incentivized patients). Despite a sense that large number of patients are in favor of PHR’s, they need to have a clearer perception of PHR’s value, and need to have a greater impact on institutions that will fund research and development of PHR’s. Private research foundations have until now provided most of the funding, with government agencies (in particular the National Library of Medicine) increasing their funding.

--[[User:Vgibbons|Vgibbons]] 11:45, 19 October 2008 (CDT)
[[Category: PHR]]