As a member of Kaiser-Permanente, I am accustomed to communicating with my physician by email, getting test results online, and reviewing my medical record while sitting at my computer. Clearly, the Internet is changing medical care, so it is important that we understand how. This issue of The Milbank Quarterly begins with “Health and Illness in a Connected World: How Might Sharing Experiences on the Internet Affect People’s Health?” by Sue Ziebland and Sally Wyke. Using the realist review method, which is designed for summarizing evidence about complex policy interventions (Pawson et al. 2005), they describe what is known about how people use and are affected by peer-to-peer Internet communication regarding health-related experiences.
Ziebland and Wyke organize the evidence into seven domains, all of which could have a positive or negative effect on health. Some of these domains are well recognized: seeking/obtaining information, feeling supported, developing new relationships, changing behavior, and affecting the use of health services. Two domains are less familiar. One is “learning to tell the story” of what has happened to oneself, and the other is the process of visualization arising from obtaining images pertaining to disease or recovery. Ziebland and Wyke discuss the difference between reading about others’ experiences and writing about one’s own, the potential for both benefit and harm, and the possibility that health care organizations could use peer-to-peer communication to improve the care of patients.
In “The Rise and Fall of the Lyme Disease Vaccines: A Cautionary Tale for Risk Interventions in American Medicine and Public Health,” Robert Aronowitz uses information from interviews and primary sources to understand why LYMErix, a vaccine approved by the Food and Drug Administration (FDA) to prevent Lyme disease, was withdrawn from the market by its manufacturer in 2002. At about the same time, a second vaccine was abandoned by its manufacturer before clinical trials even began. These events happened in the context of what has been called the “Lyme disease war,” involving bitter disputes among advocacy groups, clinicians, and academic researchers about such basic matters as the diagnosis and nature of Lyme disease, its complications, and its treatment. LYMErix became identified with a particular position on these issues.
Aronowitz’s article illustrates three important distinctions. One is between the regulatory approval and the market success of a drug. Even though the Lyme disease vaccine passed the regulatory test as being safe and effective, it failed in the marketplace. The second distinction is between the kinds of evidence required for regulatory purposes—results from controlled trials—and the kinds that can affect the market for a vaccine, on which anecdotal accounts from patients and clinicians can have a powerful influence. In a third distinction, Aronowitz suggests that risks of harm are much more acceptable to patients when an intervention addresses an existing disease or condition than when its purpose is to reduce the risk of a disease or condition, where evidence of even remote possibilities of harm can have powerful effects on consumer behavior. This means that risk-reducing practices and products, which are becoming a more important part of medical care (Aronowitz 2009), will increasingly have to show social and psychological acceptability as well as clinical efficacy.
This point is supported by the next article in this issue, “The First Rotavirus Vaccine and the Politics of Acceptable Risk,” by Jason Schwartz. The use of RotaShield, a vaccine against the rotavirus infection, a common cause of severe diarrhea in infants and young children, was halted by the Centers for Disease Control and Prevention (CDC) after reports began to accumulate in the Vaccine Adverse Event Reporting System, which is operated by the CDC and the FDA. Schwartz’s account, based on documentary evidence and interviews with key informants, looks at government health officials’ decision-making process. He concludes that the decision to withdraw the CDC’s recommendation for use was based not only on the particulars of the RotaShield case but also on larger concerns about preserving public confidence in overall vaccination efforts in the United States. A particularly important aspect of the RotaShield case is that decisions made in the U.S. context, in which the health consequences of childhood diarrheal disease are relatively manageable, had spillover consequences regarding the availability of the vaccine in poorer nations in which the risk-benefit profile is quite different.
The next article in this issue is “Uncovering the Benefits of Participatory Research: Implications of a Realist Review for Health Research and Practice” by Justin Jagosh and his colleagues. Participatory research involves partnerships between researchers and those people affected by the issues under study. In addition to assessing what is known about the added value and possible limitations of the partnerships in such research, the article explains the logic, methods, and vocabulary of a realist review (e.g., the use of theory and a focus on context-mechanism-outcome configurations). The authors describe, in terms of the theory of partnership synergy (Lasker, Weiss, and Miller 2001), the process-outcome linkages in the twenty-three participatory research projects they studied. They then identify and discuss seven ways in which participatory approaches may add value to research—making research more culturally and logistically appropriate, enhancing the recruitment of participants, increasing the capacity of stakeholder groups, creating productive conflicts, increasing the quality of research outputs, enhancing the project’s sustainability, and creating system changes and unanticipated activity. They report that achieving these benefits can depend on contextual factors, which they also discuss.
A recurrent theme in the Quarterly concerns the usefulness of theory in policy-oriented research, and the next article provides another example. It is “Silos and Social Identity: The Social Identity Approach as a Framework for Understanding and Overcoming Divisions in Health Care” by Sara Kreindler, Damien Dowd, Noah Star, and Tania Gottschalk. Better integration and collaboration among health professionals is an often expressed and commonly frustrated goal in health care settings. Kreindler and her colleagues argue that success or failure is not just a matter of interpersonal relations. Instead, success should be sought by thinking about group processes. They explore five dimensions of the social identity approach: social identity, social structure, identity content, strength of identification, and context. These dimensions, they suggest, form a theoretical framework for understanding certain organizational problems that involve people with different social (or professional) identities. Kreindler and her colleagues applied this approach to a review of the health services literature that uses some variant of the social identity approach. They summarize what has been learned and make the case for using the social identity approach to understand group behavior, which often acts as a barrier to needed change in health care.
The final article in this issue is “Moving from Intersection to Integration: Public Health Law Research and Public Health Systems and Services Research” by Scott Burris, Glen Mays, F. Douglas Scutchfield, and Jennifer Ibrahim. This is a follow-up to an earlier article about a project funded by the Robert Wood Johnson Foundation to develop the field of “public health law research” (Burris et al. 2010). Whereas the previous article laid out the dimensions of this field, the current one is concerned with the field’s relationship to research on public health systems and services. The authors propose a shared research agenda for what have traditionally been two separate fields. The agenda includes a focus on the structural role of law in shaping public health agencies and their effects on public health, and also research on both the implementation of laws pertaining to public health and the factors that influence the enactment of laws to enhance public health.
Bradford H. Gray
Aronowitz, R.A. 2009. The Converged Experience of Risk and Disease. The Milbank Quarterly 87(2):417–42.
Burris, S., A.C. Wagenaar, J. Swanson, J.K. Ibrahim, J. Wood, and M.M. Mello. 2010. Making the Case for Laws That Improve Health: A Framework for Public Health Law Research. The Milbank Quarterly 88(2):169–210.
Lasker, R.D., E.S. Weiss, and R. Miller. 2001. Partnership Synergy: A Practical Framework for Studying and Strengthening the Collaborative Advantage. The Milbank Quarterly 79(2):179–205.
Pawson, R., T. Greenhalgh, G. Harvey, and K. Walshe. 2005. Realist Review—A New Method of Systematic Review Designed for Complex Policy Interventions. Journal of Health Services Research & Policy 10(suppl. 1):21–34.
Author(s): Bradford H. Gray
Volume 90, Issue 2
Published in 2012