Many health experts see “consumer engagement” as a key to improving quality and lowering costs. But how to get people to be more actively involved in their own care has vexed these same experts for years.
Computers have unquestionably made things easier by enabling individuals, with a few clicks, to delve deeply into whatever health problem is bothering them; to learn about the advantages and risks of different treatments and medications; and, though they have not been widely used to date, to compare the cost and quality of different hospitals and physicians.
With the growth of electronic medical records, health care systems are now offering patients access to at least some of their medical records. But one kind of record has consistently remained off-limits—the doctor’s own notes. Through a series of grants to Beth Israel Deaconess Medical Center generated by the Robert Wood Johnson Foundation Pioneer Portfolio, the Foundation has been trying to change this. The program—called OpenNotes—has been testing, in three different medical settings, the idea of patients having access to their physician’s notes.
In this chapter of To Improve Health and Health Care Volume XVI, Irene M. Wielawski, a frequent contributor to the Anthology, examines the OpenNotes program in depth. Based on extensive interviews and visits to each of the sites, she concludes that the program has the potential to be a game changer (which is the goal of Pioneer-generated programs). She cautions, however, that because OpenNotes appears to be popular and effective in primary care settings does not necessarily mean that it will be equally so in specialty settings—especially those such as psychiatry and oncology, where the balance between openness and patient protection may have to be set differently.
Irene M. Wielawski is an independent writer and editor specializing in health care and policy topics. She has written extensively on socioeconomic issues in American medicine, particularly the difficulties faced by people without timely access to medical services because of financial, geographic, cultural, and other barriers. Wielawski was a staff writer for nearly 20 years for daily newspapers, including the Los Angeles Times, where she was a member of the investigations team. Subsequently, with a research grant from the Robert Wood Johnson Foundation, she tracked local efforts to care for the medically uninsured. Other commissioned projects include producing pediatric medicine segments for public television, an analysis of the Massachusetts health reform law, and collaboration on the redesign of the classic business school case study for use in graduate-level health professional studies. Her independent work appears in the New York Times and the Los Angeles Times, among daily outlets, in magazines, on Websites, and in peer-reviewed journals and books. Wielawski has been a finalist for the Pulitzer Prize for medical reporting and shared in two Los Angeles Times staff Pulitzers, among other honors. A graduate of Vassar College, she is a founder and current board member of the Association of Health Care Journalists and chairs the group’s Right to Know Committee.