These notes draw on presentations, observations, and discussions at the May 30-31, 2002 meeting in New York City that brought together OSI grantees of the Physician/Consumer Alliance Funding Initiative. The focus here is on broader insights and lessons learned. Where individual projects are cited as examples, they are referred to by the name of the lead organization.

Overview Comments

Whether the alliances formed under the OSI initiative involved a medical society and a citizen's group, physician volunteers and the schools, women of color and white physicians, or health care institutions and the faith community, the broad outlines of their approaches were similar—determine whether it made sense to work together, figure out how to do it, identify and raise awareness about issues of common concern and seek solutions.

Dissatisfaction with managed care provided the initial impetus for many alliances. The Illinois Campaign for Better Health Care, for example, moved forward because both physicians and consumers were concerned about "outsiders" dictating the quality of health care in their communities.

Changing physician attitudes also fostered alliances. Elements of the shift include: a new generation of physicians; a decline in paternalism; an appreciation for teamwork; and concerns about access to care and about the impact of managed care.

Prior to the backlash against managed care, physician/consumer alliances seemed highly unlikely. Even now, this is a relatively new phenomenon headed in uncertain directions. In a changing health care environment, much of what has been painstakingly built can evaporate quickly. Issues related to cost and medical malpractice could still drive a wedge between participants, as can managed care itself (i.e., association with a health plan may tarnish a doctor in a patient's eyes).

Alliances are likely to splinter without a driving force to keep them together. The momentum has strongest when the parties can join together against a perceived "enemy" (i.e., managed care) or on the basis of disease-specific interests (i.e., families affected by Parkinson's disease align with clinicians and researchers in the field).

A striking degree of political activity is taking place around health reform, despite the perception that these are quiescent times.

The Limits and Value of Self-Interest

Every community, and every health care system, has limited resources and must decide how best to distribute those resources among broad and competing interests. Physicians and consumers both need to be responsible stewards, aware that their actions affect the total resource pool and willing to say not only "I want," but "what can we do?"

We are a long way from achieving this. While cloaking their concerns in medical ethics, physicians often complain heartily about lost income. Likewise, consumers focused on a specific disease may perceive discussions about universal principles as a personal loss. Who is willing to sacrifice something to give those with nothing a share?

Part of the challenge is that health plan members and clinicians rarely feel themselves to be part of the same community. Without a shared sense of "we," consumers are likely to be skeptical when a clinician pays attention to how resources are used.

Realpolitik demands that we understand and acknowledge self-interest and identify concrete issues that will galvanize people's attention. As the same time, we need to challenge them to consider how those interests link to the greater good. The key is to "layer on" to the notion of self-interest an appreciation for larger issues and a commitment to dialogue.

Encouraging Community Engagement

Securing physician participation in community-oriented projects is extremely difficult; this is not unique to medicine but reflects a larger societal context. Though the concept of the physician as a patient's greatest advocate is embedded in the relationship, it is typically viewed as a one-on-one dynamic in a medical office, not in the political sphere. Some physicians need to be educated about the broader role they can play as advocates.

What motivates physicians to take on civic involvement? The California Medical Association Foundation's focus groups with physician activists offered several answers: a mentor, typically a family member or a practicing physician, often provided motivation; older physicians said community service reminded them why they first chose medicine; younger physicians perceived more balance in their lives when they could combine work, family and community.

A core sense of community citizenship should be part of the definition of medical professionalism. It makes sense to articulate that value with students so that it is embedded from the start of their careers but medical schools have done little to foster connection to community participation. On the other end of the professional continuum, late career and retirement-age physicians can fill advocacy roles as a natural evolution of their commitment to caregiving. Who can step in to promote "obligation to community" as part of the physicians' work, and point the way to action?

On Collaboration, Compromise and Credibility

In anthropological terms, consumers, physicians and health administrators come from different cultures, with different histories. Effective collaborations don't occur without facilitation and a certain "ripening" process.

Medical societies and other professional organizations are often more mainstream and conservative than the community groups with whom they are trying to work. Community activists may need to become a little more incremental in their thinking to create successful alliances. As a track record of partnerships develops, physician groups, who have tended to see consumers as "bomb throwers," may be reassured.

Collaborations strengthen the credibility of both consumers and physician groups and increase their leverage in the political process. Legislators are more likely to respond to a coalition that is speaking with one voice.

The willingness of professional organizations to lend their name to an initiative helps attract other providers. The existence of a formal collaboration between the New Hampshire Medical Society and the Citizen's Alliance, for example, enhanced its legitimacy.

Representatives of the Boston-based Community Catalyst described four evolutionary steps in the relationship between consumers and organized medicine:

• 1. Consumers as untouchables: communication is minimal and very confrontational.
• 2. Consumers as troublemakers: early dialogue begins as consumer groups realize that in their militancy, they failed to identify support within the institutions they were confronting.
• 3. Consumers as political date: both parties realize they can work together on some agenda items.
• 4. Consumers as collaborators.

Compromise is essential. In one example, the South Carolina Appleseed Legal Justice Center created a booklet, in cooperation with the state medical society, that included information about litigation as strategy for accessing health care. Despite its discomfort, the medical society remained involved in the booklet's distribution. Trust was established, then confirmed when the same players were able to cooperate to avoid Medicaid cutbacks.

Learning to Talk, Learning to Listen

Many of these initiatives gave consumers their first opportunity to participate in activities in which they felt doctors were listening. Even so, in at least one project—Consumers for Affordable Health Care Foundation—consumers were reluctant to join focus groups with doctors because they felt they could not be completely open.

Anger among physicians—who feel robbed of autonomy, as well as their income—may need to be addressed before they are ready to listen. Representatives of the American College of Physicians—American Society of Internal Medicine project observed that "grief counselors," or an equivalent, might be used to help physicians vent.

Empowering consumers—giving them an effective "voice"—is essential to the process of building alliances and implementing change.

Viable alliances require not only speakers, but listeners. Organizations and professionals need to strengthen their receptive skills to hear what consumers are saying.

Building collaborations is "about going slow to go fast." Effective communication includes examining ourselves and our own experiences, then being careful not to project assumptions and personal biases on to others. Consumers and advocates are apt to be more frank and strident and may need to tone down rhetoric and use conciliatory language. Physicians need to learn how to work with non-physicians and to recognize that they are not necessarily in charge.

Bringing multiple parties to the negotiating table can be tricky. The dialogue among some participants may need to reach a certain level before it makes sense to involve others. Yet it is important not to make anyone feel as if their involvement was an afterthought.

A difference between "real interests" and positions often emerges during negotiations. Part of the dialogue is to figure out what is real.

Advocacy groups need to ensure in their actions and behaviors that they truly represent the people they profess to represent. If the issue is expanding access, for example, the uninsured need to be at the table. Similarly, educational materials need to be reviewed by cross-discipline, cross-cultural groups; in general, it is best to create culturally appropriate texts, rather than translating existing materials.

Building Infrastructure

Consumer voices need to be institutionalized via investments in infrastructure—i.e., strategic planning, organizational development, management. Several initiatives set aside resources for leadership development. For example, the Brigham and Women's Hospital project developed training intended to help women of color feel more comfortable discussing racism and talking to white physicians.

Process may be as important as product and needs to be managed, though this can sometimes create delays. For example, the Barnes-Jewish Hospital and Washington University School of Medicine project struggled with the question of how many rounds of "checking back" with participants were necessary in its curriculum development project. An endless cycle of seeking input, revising, and then seeking input again can be problematic but without sufficient input, the benefits of collaboration are lost.

All organizations need to understand one another's strengths and weaknesses. Despite their more limited resources and capacity, consumer organizations must attain a certain level of competence and organizational ability to earn respect.

The Art of Relationship Building

Politics and policy are ultimately about relationships. Tending to the development of those relationships means working at multiple levels and finding ways to connect those levels (i.e., incorporating public policy and specific institutional issues).

Two constituent groups can be at odds over one issue and work together on another; thus, it is essential not to burn bridges. That requires honesty and respect. Representatives of Project Link in Austin said, "Where we can agree, we can move forward together; where we fight, we fight clean. What's key is that we keep talking." The "rule of no surprises" is also essential—advocates need to let other interested parties know their positions on, say, a legislative issue.

Many projects viewed their initial collaboration as a way to establish trusting relationships on which to build other programs. The initial OSI investment often served as leverage to nudge communities and providers further. A funder's willingness to provide resources enhanced the credibility of these initiatives in the academic world.

A common theme: "the more we worked together, the better we did."

A "Community of Interests"

The goal of alliances is for a "community of interests" to emerge. The dialogue that has begun between physicians and consumers has to be expanded to others. Some potential players:

• Other provider groups: Nurses, physician assistants, and midwives, all of whom are beginning to assert their rights.
• Health plan representatives: To date, bringing this group into alliances has proven almost impossible. It may become easier as stronger links are built between physicians and patients.
• Employers: Opportunities exist for productive dialogue with businesses, which can be encouraged to factor in absenteeism, productivity, and workers' compensation when weighing the costs of the health insurance benefits they offer.
• Staff: The frequent changes that occur in the leadership of professional organizations demand strategies for establishing rapport and relationships deep within the organizations, at the staff level. Likewise, projects attempting to establish relationships at the level of individual practitioners may benefit from involving office staff.

It is also worth noting that consumers with employee-sponsored or fee-for-service coverage have not been the focus of advocacy efforts; this is a substantial area that has been left out of the dialogue.

The dense collection of interest groups in the health care environment is continually redefining itself. What begins with two interest groups on opposing sides changes forms as they each side drafts other interests into the debate.

Access and Resource Issues

Access emerged repeatedly as an issue of concern. A hunger among national medical groups to deal with the uninsured may create new opportunities for alliances. Physicians' attitudes towards universal access have undergone a sea change as they experience disruptions in their relationships with patients that are linked to managed care.

How are the issues of higher reimbursement for providers and more coverage for consumers linked? Rather than viewing them as tradeoffs, they may suggest strategies for collaboration. Physicians working with Consumers for Affordable Health Care Foundation in Maine, for example, recognized they could not get consumer support to increase reimbursement without a commitment to expanding access as well.

As we invigorate a community of advocates, however, spending pressure grows. We need opportunities for dialogue about cost-cutting and reallocating resources.

Consumers and doctors share the broader societal discomfort with acknowledging mortality, or limiting medical care but it is difficult to establish spending boundaries without addressing this.

Basic Ground Rules

Some general guidelines for building alliances:

• Identify concrete issues on which to organize locally.
• Understand your community and its institutions.
• Be explicit about barriers.
• Consult spokespeople representing a diverse array of perspectives.
• Educate physicians that their advocacy makes a difference.
• Educate community groups about the health care system.
• Emphasize assets and capacities, rather than obstacles.
• Work with trust and respect.
• Choose meeting places carefully, respecting people's sense of territory.
• Recognize that sustaining and growing collaborations is an ongoing process that takes time.

Scaling Up

Where are the opportunities to "scale up" from the state level? Rather than wait for national health care reform, we need to focus on incremental change and pay attention to replication. Discussions and new models at the state level will allow us to be more sophisticated as strategic thinking moves to the national arena.

It is important not to become too enamored with the "romance of the local." If everything is seen as distinctive and dependent on local conditions, the message is that knowledge can not be transmitted and projects become fragmented and isolated.

The challenge is to share conclusions and recommendations about what we have learned and to keep one another informed—not only about what worked but about what did not. We need to create both formal and informal linkages and to build on successful models.

Attention needs be paid to marketing products and maximizing press coverage. A caution is that the skill set required to take a successful local idea to scale may differ from the one required for initial project development.

The Future

Most of the national health care funders, including the Robert Wood Johnson Foundation, will not fund advocacy work; funders interested in organizing tend to steer clear of health-related grantmaking, believing that larger institutions have it covered. OSI has a role to play in bridging this gap.

Ron Pollack of Families USA proposed four key areas in which consumers and physicians might find common ground:

• Access: A comprehensive strategy to cover the uninsured is unlikely in this political climate but we can foster a dialogue, identify strategies for incremental change, and build support for making this a higher priority.
• Medicaid: Nurturing a dialogue between consumer organizations concerned about expanding public programs and physician organizations aggrieved by low payment levels is essential.
• Prescription drug coverage: Greater collaboration can address the conflicts of interest that arise with soaring drug costs, rising numbers of prescriptions, and huge corporate marketing expenses.
• Empowerment: Collaborations support the nascent institutions being developed to help consumers use the health care system wisely and in their own best interests.

Other areas for possible collaboration: health program management; population health; health care governance; racial and ethnic disparities; patient safety; cost control.

How do we invest in collaborative strategic thinking to build on existing work? Among possible targets of grantmaking:

• Identify ways for collaborative initiatives to share information, get feedback from one another, and develop strategic plans. This will help balance local variation with the need for a national approach.
• Explore possible partnerships with some of the new foundations emerging from the Blue Cross conversions.
• Develop prevention-related initiatives, an area in which physicians are already interested. Valuable by themselves, they are also a tool for building relationships.
• Help physicians develop the skill set they need to work more effectively as collaborators. To work in the community, physicians need to speak the language of the community.