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WELCOME TO THE EMERGING HEALTH ADVOCATES ASSOCIATION

A small group of Health Advocates came together April 10th and 11th, 2006, in Shelter Rock Long Island, to determine whether there is a need for a professional association of Health Advocates. Reservations, questions and possibilities were debated during the two day "retreat," and the group decided to form the Health Advocates Association.

For a copy of our summary statement, click here

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WHY AN ASSOCIATION OF HEALTH ADVOCATES, AND WHY NOW?

Would an association of Health Advocates be useful to advocates? Would it be useful to the public? Why are these questions arising now? After extensive debate, it was agreed that such an organization would not only be useful, but that it is timely and necessary, for the following reasons:

AN ASSOCIATION OF HEALTH ADVOCATES WILL HELP:

• health advocates be leaders in defining shape/direction of a profession that is showing definite signs of coalescing;
• give us infrastructure to marshal the power of a common voice;
• answer the questions, "Where do you go if you want to be a patient advocate," and "How do you become an advocate?"
• better equip advocates to do their jobs in an ethical, competent way
• protect the public by providing some guidelines about ethical conduct and professional standards.
• provide needed benefits such as health insurance and pension plans;
• answer the question, "Where is the professional voice of Health Advocacy?" by publishing a journal and developing a web site.

It will not be easy to build an umbrella association flexible enough in its commitments, purposes, and influence to accommodate the diverse array of health advocates now working in the field, cohesive enough to create a meaningful professional identity and voice, and coherent enough to be held to useful standards by the public.

The process of professionalizing includes losses as well as gains - including a possible loss of the creativity/flexibility which makes true advocacy effective and draws so many to the work, and the potential for increased cooptation. Fears that the Society will create insider/outsider status, excluding advocates without specific educational credentials, or those without personal life experience with illness, surfaced consistently throughout the discussions at Shelter Rock.

A second issue returned to again and again was the importance of the association being truly useful to its members, and of taking care not to duplicate functions already fulfilled by others in the advocacy landscape (e.g., the direct provision of advocacy education/training, which is already available from multiple sources). The Shelter Rock group affirmed a commitment to attend to these and other sensitive issues in an on-going way as the first steps towards building a concrete membership association for individual health advocates are taken.

BACKGROUND

There were at least two specific events that precipitated the Shelter Rock retreat. One was a "patient advocacy summit II" organized by JoAnne, Elizabeth, and others in Chapel Hill, North Carolina, in March of 2005. At this meeting, issues of credentialing, professionalization of advocates, development of competencies for the field, and tensions between "lay" and "professional" advocates arose repeatedly. At the end of the two days in Chapel Hill, many left feeling a keen need to address these issues more thoroughly and more directly than had been possible at that Summit.

The second precipitating event was a meeting at the Genetic Alliance conference in Washington D.C. in July of 2005. Numerous members of the Genetic Alliance had requested a society or association of health advocates, to be both an umbrella organization, offering 'lay advocates' benefits and networking, as well as a resource connection for training opportunities. Sharon Terry called a 7am forum, inviting any advocate to express her/his need for such an entity. An Internet listserv was created for further discussions, a survey of interested members was disseminated, and the results pointed to a real need for an association, separate from the capacity-building services and policy drafting offered by the Genetic Alliance.

THE ADVOCACY LANDSCAPE (TURN OF THE 21ST CENTURY).

Today, Health advocacy and the advocate experience is diverse. Definitions are not standardized; terms currently in use - e.g., patient advocate vs. health advocate; consumer vs. patient vs. resident vs. client - cause problems. Advocates occupy a wide range of positions in the workforce (paid and volunteer) and advocacy may involve playing many roles.

The emerging Health Advocates Association affirms the need to distinguish between:

• Individuals advocates:

  Such as Julie Beckett, who advocated successfully for legislation to better serve the health needs of her daughter, Katie, and other families; or individual clinicians (doctors or nurses) who may go beyond being a health provider and act as an advocate on behalf of others

• Advocacy organizations:

  These include: Families USA, Gay Men's Health Crisis, Breast Cancer Action, Muscular Dystrophy Association

• Advocacy roles:

  For example, a subject advocate in a clinical trial, the chair of a state legislative health committee, or a patient representative in hospital.

We agree that central to all advocacy is functioning as a change agent, either by directly causing productive change for health/health care and/or by empowering others to do the same. Health advocacy includes:

• direct service advocacy (working with or for individuals/families)
• legislative/policy advocacy
• research advocacy
• community-based advocacy (working with or for a geographically-defined group)
• population-based advocacy (working with or for a group defined on the basis of a shared health/illness experience or other characteristic)
• education advocacy

Advocacy work can be done from a number of different settings/bases, including:

• grassroots advocacy networks or groups (the "kitchen table")
• the not-for-profit sector
• provider institutions (e.g., hospitals, nursing homes)
• community organizations or clinics
• for profit corporations
• labor unions
• government agencies
• legislative bodies

HISTORICAL ORGANIZATION BY ADVOCATES

In 1971, under the auspices of the American Hospital Association, the Society for Healthcare Consumer Advocacy1 (SHCA) was founded as an association of mainly hospital-based patient advocates. SHCA remains a membership organization of the American Hospital Association rather than an independent professional association.