If you are in England, you might be an advocate if…  you are a solicitor with additional qualifications that allow you to argue cases in the highest courts. An English advocate is roughly equivalent to an American attorney who is qualified to argue in front of the Supreme Court. Just to keep things confusing, there are also lawyers and barristers in the legal profession. Each has its own subtle differences.  In France, you might be an avocat or maître. My high school French suggests master as a translation for maître. Of course, I don’t think the French legal profession includes Maître d’s.

This blog, however, is not about the law, lawyers, solicitors, or masters. In the U.S., “advocate” can be a verb (action word—remember high school English?) or a noun (person, place, or thing). For the  reader fascinated by word oddities, it is interesting that the pronunciation of the word advocate changes from noun to verb. For the expert linguists, here is a challenge: What common word in the English language changes pronunciation when capitalized? Send your answer to acwooly@gmail.com  The first correct answer gets a copy of my book: ON FIRE-Reflections on a Journey Through Life with Parkinson’s Disease.

Back to advocate. You can be a person who publicly supports or recommends a particular cause or policy (noun) or publicly recommend or support a cause or policy (verb) or both! Historically, people diagnosed with Parkinson’s were referred to by a variety of terms including, patient, subject, sufferer, Parky, person with Parkinson’s (PWP), victim or case. Most terms were passive or dehumanizing and disliked by the PD community.

A new term gaining favor is Parkinson’s Advocates. We are determined to be active and to make a difference. A brilliant Parkinson’s advocate is Sara Riggare, a professional engineer diagnosed with PD from Sweden who (along with Therese Scott Duncan and Maria Haglund) created a framework for advocates and advocacy. Now, Parkinson Advocates (PA’s) have a means to acknowledge and use our power. Sara states, “it is helpful for promoting a more nuanced discussion around patient activism, irrespective of diagnosis. We believe that it can be used to further explore different aspects of patient activism, both in specific diseases, such as PD, or across diagnoses.”

In other words, we now have a tool to help us take charge of our situation and our lives. We can identify the various ways we advocate; we can choose new and different avenues to advocacy. The framework currently comprises 12 + 1 different roles/competences/skills. A person often takes on or uses several roles/competences/skills at the same time and alters between roles/competences/skills in different situations and/or contexts. Here are the 12+1:

• Selfcare Expert—does what they can to learn about their health and wellbeing and works to improve it. 

• Activist—a person who uses their works for changes in policy and practice related to their health and healthcare needs.

• Communicator—writes and/or speaks about their own health experiences in conferences and meetings and/or articles, blogs and social media.

• Entrepreneur—builds companies or organizations from their experiences with health and healthcare needs.

• Innovator—creates or has ideas about new solutions based on their health and healthcare needs.

• Mentor—shares their knowledge and experiences to teach others.

• Tracker—self-monitors health issues

• Hacker—addresses health issues through the use of technology.

• Knowledge Seeker—stays updated on the latest scientific articles and evidence.

• Patient Researcher—uses scientific methods to investigate their health issues and/or partners with established academic researchers.

• Healthcare Partner—creates and manages partnerships with healthcare professionals.

• Healthcare Coordinator—manages and coordinates multiple healthcare contacts for their health issues.

• ?—is added to illustrate that we think that the framework will not remain static, it is likely to change over time, as roles/competences/skills are added or become irrelevant. 

As I peruse the list, I see that at different times and for different reasons, I fall into one or more of the roles. This blog is supposed to be educational, so I challenge the reader to think about the ways you are an advocate in the various domains of your life (family member, community member, employee and so forth). What roles are important to you? What new roles will you assume?

The complexity of the framework is disguised in its simplicity. Although designed with Parkinson’s at the forefront, it is applicable to almost any situation. This framework describes various roles for an advocate. More importantly it suggests various means of being an advocate. Thank you, Sara Riggare, for sharing this framework. https://www.riggare.se/2020/12/06/draft-version-of-the-spetspatient-framework/

Power to the people. Power to the advocate!

A.C. Woolnough is Chair of the WPC 2022 Parkinson Ambassadors and was also an Ambassador for the 5th World Parkinson Congress. Before his involvement with the WPC, he was Vice-Chair of the People with Parkinson's Advisory Committee at Parkinson’s Foundation where he also trained to be a Parkinson's Advocate in Research (PAIR). He writes a monthly column for an Idaho magazine, The Reader and also he has written a book, On Fire-Reflections on a journey through life with Parkinson’s Disease.

Ideas and opinions expressed in this post reflect that of the author(s) solely. They do not necessarily reflect the opinions of the World Parkinson Coalition®