Policy Memo for Masters in Public Health

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CONFIDENTIAL MEMORANDUM

To: Scott Bittle, Director Public Issues Analysis, Public Agenda From: Alison Kadlec, Director Center for Advances in Public Engagement (CAPE), Public Agenda. Date: May 30, 2002 Re: Members of public wage legal battles for access to health data Background On May 23 of this year, an appellate court in New York ruled that the State Department of Health was justified in denying a local grassroots organization access to anonymized cancer registry data. The group had requested access to this data in order to investigate correlations between cancer cases and environmental conditions within the state. In objecting to the request, the state argued that members of the public might use anonymized data, in conjunction with other publicly available documents, to uncover the identities of patients. This case follows similar litigation filed last year in Illinois wherein the state’s most-read newspaper requested access to Health Department data documenting community-specific incidences of neuroblastoma. The case is currently pending before a state appellate court. In both of these instances, members of the public have encountered governmental resistance in their efforts to become active participants in health research affecting their communities. For over thirty years, Public Agenda has researched and promoted ways in which citizens may confront pressing public problems in order to “close the gap between leaders, experts and the general public in the search for solutions.” Thus far, we have focused our efforts almost exclusively on developing systems to enhance public participation in educational and environmental matters. In contrast, we have yet to develop organizational goals regarding citizen participation in public health research and policy discussions. Public Agenda’s silence on issues pertaining to public health research places us in a difficult position. For one, it precludes our organization from becoming a contributor to a prominent, contemporary public participation debate. Furthermore, by discussing environmental issues while neglecting pressing public health matters, we ignore the relationship between the two fields. Indeed, in the late 19th century, public health work focused primarily on managing disease-causing agents in the environment (e.g. sanitary reforms). This link has remained strong throughout the history of public health practice, as exhibited in public health practitioners’ involvement in occupational safety reform. Today, our own directors and fellows implicitly acknowledge this link as we discuss the health consequences of Global Warming. Historical analysis also demonstrates that public health initiatives have for decades benefited from public participation. Lay service organizations, for example, spearheaded early 20th century surveillance work aimed at monitoring and treating congenital malformations in children.

Similarly, in the 1970s, lay citizens – not public health experts – in Woburn, MA confirmed the existence of leukemia clusters in their community and linked them to industrial chemicals polluting their water supply. In the 1990s, health and environmental research in Canada and Spain failed to generate desired outcomes, a failure now linked to the researchers’ disregard for lay public participation. In rejecting public requests for anonymized cancer data, the New York and Illinois Departments of Health have ignored this history of beneficial lay participation in health research. At the same time, by impeding public attempts to explore the safety of their communities, the departments may have engendered distrust and unease among residents. Health Departments would instead benefit from examining methods for permitting and managing lay public participation in community health research. Currently, states lack specialized methods for managing public access to data, minimizing invasions of patient privacy, and defining the role of the public as legitimate participant in scientific research. In keeping with its role within Public Agenda, the Center for Advances in Public Engagement has developed recommendations for achieving these ends. The Directors of Public Agenda can position our organization to benefit from recent coverage of the New York and Illinois cases by endorsing these recommendations. In so doing, we will reiterate our belief in the synergistic relationship between scientific research and the general public. Issue Departments of Health currently perceive an adversarial relationship between public health practitioners and members of the lay public seeking access to anonymized health registry data. Departments have failed in developing a framework for managing lay participation in health research and in acknowledging the benefits of public participation in data analysis. Public Agenda should endorse a model to address these issues. Options

1. Model 1: Departments of Health should provide open access to anonymized data for members of the lay public.

2. Model 2: Departments of Health should develop an analog to the Institutional Review Board (IRB) model tailored specifically for granting and monitoring lay access to anonymized data.

3. Model 3: Departments of Health should encourage lay members of the public to petition the appropriate IRB for research-related data access.

Recommendation Model 2 Rationale

The public health profession is responsible both for exploring the determinants of health and disease in society and providing a service to the public by acting on their findings. As a discipline, public health borrows from individuals with training in multiple fields, including epidemiology, sociology, anthropology and history. A review of the history of health practice also notes an important role for members of the general public in facilitating the work of public health practitioners. Departments of Public Health should make use of public interest by developing a formal system for managing public access to anonymized health data from disease registries. The most plausible method for achieving this end entails the creation of a lay analog to the IRB, the committee that determines access to registry data for researchers. This model rejects the patent extension of the current IRB model to members of the lay public (Model 3 above). IRB practice has developed over the course of several decades to respond specifically to scientific research. Members of the lay public are not trained in navigating IRBs, nor are IRBs attuned for examining the special needs of the general public. Indeed, to equate the interests of researchers with the interests of individuals attempting to understand the safety of their communities is to oversimplify matters. It is not clear, for example, whether lay community review of data is actually a form of “research.” Thus, in order to ensure that the special needs of the lay public are met, Departments of Health should establish specialized community review boards to consider lay requests for access to anonymized data. This board would (i) ensure that anonymized data cannot reasonably be used to identify patients, (ii) articulate the responsibilities of the lay individual(s) in accepting the data, and (iii) serve as a liaison between the individual(s) and the Department of Health to facilitate idea exchange between parties. The board would be composed of patient advocates, physicians, health professionals, and members of the community. Due to the potential for this board to facilitate communication between the public and Department, and given its potential to safeguard the privacy of patients, it is preferred over Model 1 above. By exploring a community review board model, Departments of Public Health will move beyond an assumed antagonism between their members and the lay public. By collaborating with the public, Departments may furthermore enhance their ability to influence public behaviors in the context of health education and outreach campaigns. Managed collaborations also demonstrate a genuine respect among Departments for transparency in health initiatives. Finally, lay collaboration is of particular value today when fluctuating funds jeopardize health department work and the politicization of science policy threatens scientific objectivity. Next Steps Public Agenda should seek the support of community groups, researchers, and others in an effort to continue developing a model for sustainable, managed lay participation in public health research. We should also establish relationships with St. Lawrence Environmental Action and The Southern Illinoisan newspaper in order to understand how best to tailor our collaborative framework to address the situations in New York and Illinois.