For the purposes of this report, Personal Health Records, often known as PHRs, are defined based on the National Alliance for Health Information Technology (NAHIT) standard definition: ‘An electronic record of health-related information on an individual that conforms to nationally recognized interoperability standards and that can be drawn from multiple sources while being managed, shared, and controlled by the individual.’ PHR applications may differ in the nature of information which they contain, the features and functions they offer, their sources of information, the locations where information is stored, their technical approaches to security, and the designation of access control. Because of this diversity, no universal definition of what constitutes a PHR has yet been adopted. Today, commonly used definitions refer to characteristics of PHRs (e.g., an electronic application accessed and managed by consumers through which personal health information is maintained and shared in a secure, private, and confidential environment.,). However, the concept of PHRs and PHR systems continues to evolve.
PHRs may provide benefits for patients such as improvement in overall health, better patient-provider communication, improved quality of care, and reduction in unnecessary tests and medication errors. Public opinion polls show that people generally favor the usage of PHRs. A 2004 Harris Interactive poll showed that 84 percent of respondents thought it would be a good idea to have a PHR. An extensive literature review on PHRs concluded that, while there is strong support for PHRs, until they provide demonstrable value to users and improvements in healthcare, adoption will remain low. Tang et al. (2008) note the value in improving our understanding of which groups perceive PHRs to be useful; which features users utilize; and, whether/how their healthcare, health-related behaviors, and overall health change subsequent to usage.
A 2003 online survey conducted by the Markle Foundation found that those with chronic illnesses and those caring for the elderly reported the highest need and most urgent interest in PHRs. A more recent study by Kaebler et al. (2008) found that those with chronic conditions could potentially benefit the most from using PHRs. However, there are many barriers to adoption of PHRs for this population. Results of a study conducted by Lober et al. (2006) showed that limited access to computers, computer anxiety, low general literacy and health literacy levels, vision or hearing difficulties, memory problems, and physical disabilities were among the top barriers to adoption of PHRs for low-income, elderly and chronically ill patients.
Medicare currently covers more than 44 million beneficiaries, making it the largest health insurance provider in the United States. A Kaiser Family Foundation study from 2005 found that four out of five Medicare Beneficiaries have at least one chronic condition and almost 63 percent suffer from two or more chronic conditions. The burden of these chronic conditions is particularly high and results in higher health costs and increased strain on the Medicare system. Patients with five or more chronic conditions represent 50 percent of the Medicare population and account for 76 percent of Medicare spending. Medicare therefore faces a critical need to reduce health care costs and improve disease management.
By providing an avenue for beneficiaries to take an active role in their health care and encouraging preventive and wellness activities, PHR technology has a great potential to not only improve health care services and reduce costs, but also impact health care outcomes. The use of health information technology has demonstrated improvements in the effectiveness, efficiency, and quality of health care delivery, improvements in patient safety, and improvements in the functioning of the health care system. This evaluation aims to contribute to the progress of federal health IT initiatives by evaluating the Medicare FFS beneficiaries’ perceptions of Personal Health Records.