1997 Partnerships for Networked Consumer Health Information Conference

Summaries of Plenary Sessions and Breakout Sessions

Redefining Roles #6: Making Informed Health Decisions

Wednesday, April 16, 1997
2:00 - 3:30 PM

Moderator: Joseph Henderson, MD, Director, Interactive Media Laboratory, Dartmouth Medical School

Speaker: David S. McWaters, PharmD, JD, Research Director, Direct Medical Knowledge, "Using-Evidence-Based Guidelines to Structure Consumer Health Information"

Speaker: Elizabeth W. Hoy, Director of Health Systems Management, Institute for Health Policy Solutions, "Choosing a Health Plan: What Do Consumers Want to Know?"

Speaker: James F. Fries, MD, Professor of Medicine, Department of Medicine, Stanford University, "Health Reforms that Improve Health"

Statement of Subject

This panel will focus on health decisions made by, or for, individuals with health problems that are likely to affect survival and quality of life, and for which one may reasonably chose among different treatment strategies. Decision making under such circumstances can be helped or hindered by several factors, including the underlying decision model (provider-centered, patient-centered, "shared") and the quality of interaction and communication between care provider and patient. And since, by definition, "informed" decision making involves the use of information, the availability, accuracy, understandability, and appropriateness of that information can be crucial. We will discuss these issues, with emphasis on the potential roles, advantages, and pitfalls of new media technologies and techniques in making informed health decisions

Key Issues, Including the Role of Technology

Who makes the decisions? Patient? Provider? Shared decision? What do we mean by "shared?" How do new media technologies affect the dynamics and process of decision making? Who participates in providing information (practitioners, peers, educators, librarians, technologists)?

What kinds of information should be presented (quantitative, qualitative). What are the relative importance, roles, and impact on decision making of aggregated information presented abstractly and personal histories, vividly depicted?

What is the role of emotional support, comfort and caring in arriving at an informed decision? How does the interposition of new media technologies affect their provision, and is this good or bad? If automated systems provide for informed decision making, should they attempt also to provide, in addition to more abstract information, non-quantitative information and emotional support?

How do we assure that the information presented has the necessary qualities (availability, accuracy, understandability, appropriateness) to support good, informed decision making.

How do we assure that systems to support informed decision making will be used? How will they be made available to a broad population? What will be the physical and social environment for their use? What changes in attitudes among care providers, and patients and family-members, are required and how will they be brought about?

Roles, Responsibilities, and Priorities of Key Sectors

Policy: Managed care organizations should present use of decision support systems by patients as a key element in formulating a care plan; this will require continued evolution and acceptance of decision models in which patients participate—to the extent they desire—in care decisions. National priorities should be established to assure the quality of information delivered to the public; the difficulty of evaluating information delivered with new media technologies, given their multiple branching and patient-data contingent presentation of information, must be recognized and accommodated via methodologic and policy development.

Legislative: provide funding and incentives for research and development of systems and evaluation methods. Provide other incentives to industry to develop systems and services that reach populations (e.g., rural, inner city) that lack intrinsic economic incentives.

Providers: should come to view use of decision support systems by patients as a key element in formulating a care plan; this will require continued evolution and acceptance of decision models in which patients participate—to the extent they desire—in care decisions. This will also require demonstration that these approaches improve outcomes. The care setting must be modified socially and physically to accommodate technology-based decision support. Decision support should be seen as a system and respective roles for technology and providers in assisting that process should be developed to achieve effects that are at least additive.

Patients/public: must learn why, when, and how to use well-designed (easy-to-use) decision support systems; they must also be allowed to make an informed decision that they would rather not use such systems and to have the provider be the prime decision maker.

Information system developers: most of the above, plus recognition that there’s more to decision making than information alone. Systems must be developed that are easily used within the care environment (or possible home) and that accommodate a broad range of education and socio-economic status among the public.

Back to Summaries and Transcripts page.