NeuroTalk Support Groups - Information and the Power of Advocacy

The preceding posts say so much about how PWP can use our growing power, made possible by the advent of the internet and the wealth of information that it provides us as patients to have the knowledge to self-manage our disease. After all we have PD 24/7 while the doctor sees us 15 min. each 3 months, and there are things we can do to improve our symptoms. This post provides three examples of how information and advocacy increase the power of PWP to make our medical research and care delivery truly patient centered. If we dont take all these steps we will likely continue to have researchers and industry asserting that they are looking out for our interests, when they are really looking out for their own interests which overlap with ours.

The most important self management issue for PD is probably exercise, which provides a good example of how information on self help can be used to improve our condition and how the "system of care" enables more effective treatment. We have to do exercise on our own, but the health care system can reinforce the message (to do exercise), and the support group structure of local PD organizations can facilitate , and reinforce and enable special exercise classes. Doctors can also reinforce the message, but it is mainly our every day environment that influences our actual choices. There are tools emerging to use the internet more creatively to motivate self care, such as using devices as e-learning modules for teaching what's known about exercise and PD, and the idea of personal health records to not only help self manage our disease but also to add to communications with health care providers using networked information systems. The Pipeline project is seeking funding to develop such information tools to empower PWP to take responsibilty for our own health.

Only by asserting our rights and taking our part of the responsibility can we develop the strength to pursuade Clinical Scientists who in many cases are our doctors for example that we require more assurances that there is no other method to provide scientific data than "sham surgury" and that if there is an adverse event, we need assurances that the sponsor of such risky research will back us up to try to fix problems resulting from unintended outcomes. Our newly revised "Reseach Participants Bill of Rights and responsibilities outlines the PWP perspective on the quid pro quo for our volunteering for research where we dont know the risk, and we cant expect any therapeutic gain.

Of course when you go to enroll in a clinical trial, it's too late to influence the rules for that study, that already have gone through many layers of approval by IRB's (local boards designed to protect research participants). At that point you can join the trial or not. The Pipeline project has established Research Partners to assist and advise clinical researchers on the patient perspective and regulatory consultants to add the patient voice to FDA and Sponsor design decisions for clinical trials. One key job these advocates will have is to communicate the Rights of PWP for greater say in the assessment and development of new therapies.

The bottom line is BE AN ADVOCATE for your own health at minimum, and if you are able, advocate for others in any of many different ways, such as opportunites provided by the Pipeline Project

Perry Cohen
Director, Parkinson Pipeline Project