This piece was published in the second issue of ON THE MOVE, the quarterly newsletter of Parkinson’s
Movement. For access to this issue please join the Parkinson’s Movement at: http://www.parkinsonsmovement.com/join-parkinsons-movement/
Making your Mark: Effective Patient Advocacy
Many people who I visit with whom have an interest in helping out have said, “I want to be an advocate” or asked “How can I become an advocate?” My short answer most often includes telling these individuals that if they have talked to someone about the effects of PD, shared their story about living with PD and perhaps “helped” someone living with PD in some way, then they have already been advocates. Everyone has something to offer and everyone’s voice is important in getting the message out that we aim to make PD a thing of the past.
Involvement at any level only requires that you speak from the heart because your passion for the cause will come through. The one thing that I always mention is that there is no room for being antagonistic in the advocacy arena. I must confess that it is frustrating at times to get your point across, but that frustration can be turned into a positive that gets people motivated to do more. Local support groups, willingness to visit with people about PD, sharing your story, letters to the editor, or other organizations that provide local support are the best way to get started. These show your commitment to the local community and also allow you to get immediate feedback on your effectiveness.
Regional organizations usually provide support through education. Involvement can involve speaking to groups and individuals about the importance of disease awareness and education. This type of organization is common in many parts of the world because by virtue of having provided outreach opportunities in their areas, they reach a wider audience. These type of organizations are gaining strength in numbers also because of the ability to focus on a certain aspect of PD, whether educating about research, focusing on programs that are available in the area, or developing a united front to raise funds for projects that will benefit their regions.
The most effective national groups usually involve training programs that help in outreach opportunities. These may include setting up partnerships with research centers to involve advocates as part of the research process, sharing concerns about disparities, seeking funding for research and supporting programs that benefit the PD community. Having the ongoing support of these organizations in your outreach efforts can provide many more opportunities to develop your platform as an advocate. Some advocates focus on equal access to clinical trials, others focus their attention on the types of research being done, and others may focus on disparities within the system.
International organizations such as the Parkinson’s Movement, to me are the most powerful, yet the most challenging in terms of getting things done because of the vast differences in the needs of the people in different countries, not to mention the regulatory agencies and how they function. The focus is the same but the ways to accomplish this takes much more effort, time, and patience. With the advent of social media and other forms of mass communication, this type of organization will have the greatest impact on the research currently being done. These also have the capacity to effect change because of the type of advocate found within their ranks. A well-prepared, well-respected, and effective advocate that includes physicians, nurses, therapists, researchers, movement disorders specialists, among others, whom are not willing to take no for an answer.
To affiliate or not to affiliate – Some people feel that affiliation will help give them more credence when it comes to activities. I agree. Organizations are interested in people that they can trust to get the word out based on the parameters of their mission statement. People that choose not to affiliate with an organization can be just as powerful on the advocacy front but tend to work much harder to establish their credibility. These individuals should be sought for their expertise, if the fit is right for any organization.
The most important thing to remember is that there is room for everyone to get involved, to the extent that they can, in the capacity that they choose, to make a true difference in seeking better treatments and ultimately a cure.
PDF’s Parkinson’s Advocates in Research (PAIR) program : http://www.pdf.org/pair