Most members of the public do not have a sophisticated understanding of how their clinical data move within or outside an often fragmented system. But, notes Alison Rein, senior manager at AcademyHealth, they do want more and better access to health information about them, their family, and their peers; in particular, they have a strong interest in electronic access to personal health information. In part the public is not as fully engaged in the clinical data utility as it could be because much of the current activity takes place out of the public eye, with data residing largely in the private sector, where commercial interests and other factors inhibit sharing. Unless we overcome market obstacles related to sequestering data for proprietary interests and the technical obstacles related to individual identification authorization and related issues, Rein asserts that a full demonstration of the clinical data value proposition for consumers, both individually and collectively, is not possible. Efforts are also needed to help the public develop a deeper appreciation for research as a public good. As a strategy to build public understanding, Rein supports increased transparency of reporting data that are meaningful to the public and enhancing the coordination and development of registries. In addition, she suggests that policies geared toward a national network for researchers, clinicians, public health professionals—and the public—might generate additional information that could, in turn, inform the public.
Highlighting an opportunity for patients and the public to share individual information, Courtney Hudson, chief executive officer and founder of EmergingMed, describes how giving disease-specific populations increased access to information helps them access clinical trial information and supports a patient-centered search for treatment options based on a patient-generated profile. Although providing access to information is important, Hudson also discusses challenges associated with employing data for secondary uses such as services and systems improvement. Throughout EmergingMed’s 8-year history, Hudson has found that patients and families are interested in informed decision making, and when they receive this benefit, they are generally willing to provide privacy-protected information in return. By contributing to a database and service that identifies similar patients, individuals can anonymously help the public in making decisions. Creating transparency and consequently building trust are also vital when working with individual health information, particularly when engaging the public in broad concepts such as evidence-based medicine. A key distinction in considering the patient’s point of view might be to view clinical data utilities in terms of patient-driven solutions instead of system-driven solutions.
Involving patients in the learning process through personal records and portals is important to patient-centered health care. Today, more personal health data are created and analyzed than ever; however, the degree to