The principles of patient-centered care emphasize patient access to information about their healthcare. Delivery of personal healthcare information to patients and families via technological systems such as electronic personal health records (ePHRs) provides an opportunity to motivate patients to improve their health and potentially increase the safety and quality of care. The American Health Information Management Association (AHIMA) defines a personal health record (PHR) as a “universally available, lifelong resource of health information needed by individuals to make health decisions. Individuals own and manage the information in the PHR, which comes from healthcare providers and the individual. The PHR is maintained in a secure and private environment, with the individual determining rights of access. The PHR is separate from and does not replace the legal record of any provider.”1
Electronic PHRs can be obtained from a wide range of providers including hospitals and physicians, insurers, private marketers, and large technology developers such as Google. Electronic PHRs either are free standing, with individual consumers loading their personal health data into the record, or are connected to the electronic medical record (EMR) of the patient's healthcare provider, whereby “official” health information can be sent to the ePHR. Some PHRs provided by insurance carriers can also be automatically populated with data, such as claims information.
Historically, research regarding health information technology has emphasized delivery of care in hospital or inpatient settings. Today, with shortened hospital stays, more controlled symptoms, and changes in reimbursement approaches, the majority of patient care occurs in ambulatory settings. Ambulatory care systems provide a unique perspective—one in which the patient's role is more important because most of the “care” occurs outside of the healthcare setting and is mainly under the patient's control. Contemporary emphasis on patient-centered care supports the notion that empowering patients to manage their health leads to improved outcomes. “Early experience confirms that when patients are given the chance to bridge the information gap between themselves, their health data, and their health care providers, many people enthusiastically take a more active role.”2
Recent technological advances provide an opportunity to use technology to empower patients by providing access to their healthcare information and providers.
Patient- and family-centered care (PFCC) has been defined as an “approach to the planning, delivery, and evaluation of health care that is grounded in mutually beneficial partnerships among health care providers, patients, and families.”3
Davis et al. have characterized patient-centered care as having seven dimensions, one of which is giving patients an “option to be informed and engaged partners in their care.”4
Patients experiencing PFCC have a better sense of control in managing their illness. Greater levels of “patient enablement” correlate with the doctor's interest in health promotion, the impact of health issues on a patient's life, and the patient's positive view of self-management.5
Preliminary studies have found that when patients have access to their health information, they feel more empowered.6
Empowered patients experience improved outcomes. Brink et al. describe the shift to an empowerment paradigm in the care of juvenile diabetes, where outcomes are improved when a combination of a team approach and patient-centered adjustments of food and insulin is put into play.7
There is growing recognition that the “brief visit model of care,” which evolved from the fee-for-service reimbursement system, fails to meet patient needs.8
Results of a national survey show 97 percent of primary care physicians support patient-centered practices, but only 14 to 33 percent adopt these practices.9
Many have acknowledged that ambulatory care systems must be redesigned to accomplish patient-centered care.10, 11
A critical component of this redesigned system is free-flowing information between the patient and provider in a “two-way interaction.”12
Electronic PHRs have the potential to incorporate many aspects of patient-centered care.
A prime component of PFCC, the involvement of patients, has been limited in the development and improvement of ePHRs. Most ePHRs have been developed from the perspective of physicians and/or information technology (IT) developers.13
As technology evolves, it is imperative to consider the utility of ePHRs from the patient's perspective. “Developers should solicit patient input regarding the education and support that patients require to make decisions and participate in their own care.”14
The purpose of this study is to examine patient perspectives on ePHR use and functionality as part of the development process of an existing ePHR, to assess whether or not these ideas are technologically feasible, and to compare the patient views to the expectations of a collaborative team of providers, IT professionals, PFCC experts, and investigators. This work is part of a larger study designed to test the effectiveness of an ePHR to increase blood pressure (BP) control by patients with hypertension. These initial waves of patient-centered input into the product design were intended to improve an existing ePHR by incorporating the patient perspective and to identify expectations of potential ePHR users.
This qualitative work asked the following questions:
- What do patients with little or no previous experience with ePHRs notice after brief periods of ePHR use?
- Are patient suggestions realistic technologically?
- What do patients with little or no previous ePHR experience expect from ePHR use?
- Can we, as experts, grasp the patient perspective or do our perceptions differ?
- Is this mixed collaboration possible?