By Glenna Crooks. I still remember the first patient advocate I ever met – Henrietta Aladjem. She outlived predictions of imminent death from Lupus and despite her condition helped others, providing information, inspiration, advocacy and hope everywhere she went. Gracefully. Persistently.

Since then I’ve met more than 10,000 advocates – some of them children – in 26 countries. In their work they help millions of patients and families address hundreds of diseases and the consequences patients face to get insurance, education, housing, employment and civil rights. In many cases, they or a loved one were in dire need of help they did not receive, so they vowed to help others. It was  a way to reclaim  power, to work through grief or to constructively use anger.

It’s impossible to be with advocates and not respect their dedication, courage and energy. That is especially the case for those working ‘closer to the ground’ where the real suffering of effected people is most palpable. I especially admire them when they venture into unfamiliar policy arenas to tell the stories they hope will create better solutions, particularly from governments. As Chair of the National Commission on Rare Diseases, their stories touched my heart and I still remember their faces.

Regardless of how well they succeed on behalf of any one patient , with one policy maker or in one disease situation however, there will always be more to do. I’ve seen advocates respond to this; having met their initial objective they band with others to help in new ways.

The past few years have not been kind to advocates. Though health reform gave them some important – but not sufficient – wins, their work is far from over. As I work with them now, these times feel tougher:

• Recession-era fund raising is more difficult and less successful,
• Clinical guidelines, built to address population health, ignore important individual differences, enlarging the scope of advocacy needs,
• Political opportunism is driving a wedge between advocates and companies, who have long had productive collaborative research, education and patient support programs

As I watch health care, not just in the US but globally, advocacy has have never been more important… or more challenging. It is for that reason I believe it’s time for the field to evolve – and be recognized – as a true profession within health care.

Full time employment does not make one a professional and home-spun approaches, learn-as-you-go communication and Tsunami-sized passion may have been enough to move mountains in the past, but those times are over. The world is more complex and whatever their cause, advocates face formidable competition for time, attention and resources.

Advocates could be better prepared if advocacy was a profession, and I believe it could evolve to that next level. This would be accomplished by creating a professional society. Yes, each advocate already has an association related to their cause and that group provides them with some of what they need, but a society for professional advocates would function as a trans-disease, trans-cause group providing more.

I would envision this as an organization of individual advocates from any sector in which advocates work – whether in non-profit associations, existing trade associations, for-profit companies or government. Over time, in much the same way that some societies certify the excellence of their members, this one would do likewise. It would:

• Develop ethical codes and professional standards of performance,
• Develop minimum standards for training,
• Provide venues to accomplish trans-disease, trans-cause common objectives,
• Provide tools for succession planning during generational turnover among the various advocacy groups, including job boards at national, state and local levels
• Publish journals reporting on best practices and advocacy professional development,
• Develop an academic base of support for skill-building education, continuing education and best-practice research and,
• Create its own government affairs capacity, not to address specific health or disease issues, but to be promote the value of a profession of advocacy overall at local, state, national and global levels and in efforts related to patient education and outreach, ombudsman and case work assistance and policy and political activism on behalf of patients. A professional society could do something that no advocacy group has been able to do well (so far) and that is to defend the good work of its members, for example, directly addressing the many claims of conflicts-of-interest from relationships with companies.

All of these efforts would improve the standing of advocates within their organizations and within policy debates and it’s about time that happened.

This entry was posted on Monday, August 30th, 2010 at 5:14 am and is filed under Advocacy. You can follow any responses to this entry through the RSS 2.0 feed. You can leave a response, or trackback from your own site.