Pre-Congress Course IV

Activism, Awareness, and Roles Patients Play 

This Activism Course will bring together up to 80 highly engaged people with Parkinson’s with the objective to become more engaged and involved in the global Parkinson’s community. This pre-congress course, designed by people with Parkinson’s for people with Parkinson’s will introduce three kinds of activism to the participants and will help build a network of engaged people who are eager to work together for a larger common good. The three kinds of activism that the program will focus on are: research activism, activism for wellness, and tools for activism. Each breakout session will be offered twice, so each attendee will be able to attend two of the three different sessions.

Program                  Pre-congress Course IV made possible with support from US WorldMeds

12:00 - 1:00PM

1:00 - 1:05PM

LUNCH (Japanese bento box offered to all attendees)

  Tim Hague (Canada)

1:05 – 1:40PM Roles Patients can play in advocacy & activism  Therese Scott Duncan (Sweden)

1:40 - 2:30PM Block I:
A: Research Activism - Karen Raphael (USA)
B: Wellness Activism - Tim Hague (Canada)
C: Tools for Activism - Martin Taylor (UK)

2:30 - 2:40PM Break

2:40 –3:30PM Block II:
A: Research Activism - Karen Raphael (USA)
B: Wellness Activism - Tim Hague (Canada)
C: Tools for Activism - Martin Taylor (UK)

3:30 - 4:00PM Break for Refreshments

4:00 - 4:50PM Panel Discussion - Where do we go from here?
Moderator: Tim Hague (Canada)
Panelists:  Ben Stecher (Canada)
                Martin Taylor (UK)
                Karen Raphael (USA)
4:55 - 5PM Closing - Tim Hague (Canada)


Session A: Research Activism

Presenter: Karen G. Raphael, Ph.D.

This intermediate-level “Research Activism” session is particularly intended for People with Parkinson’s (PwP) who are already familiar with the clinical trials and clinical research process and who may already identify themselves as Research Advocates. It is intended for those who wish to deepen their understanding of inferences that can or cannot be made from a published clinical research paper, science journalism study summary or clinical trial protocol. The intent is to improve participants’ ability to effectively communicate research findings and journalistic research reports in terms of strengths and limitations and applicability to a particular individual with PD. It also intends to improve skills of session participants who work with funding agencies or pharmaceutical companies to go beyond improving recruitment, retention and acceptability of a protocol to PwP. Specifically, it aims to prepare you to advocate for trial designs that are maximally geared toward allowing other PwP to evaluate whether findings from a successful Phase 3 trial indicate that “this new treatment is appropriate for me, given my current clinical situation.”

Learning objectives:

  • Improve ability to understand relative strengths and limitations of various clinical (trials and other human) research studies and what can be concluded from them.
  • Develop your skepticism-sniffing skills, even if your odor-sniffing skills used to be better.
  • Expand your skills as a research advocate by understanding and improving patient-centric inferences that can be made from clinical trials.

Session B: Wellness Activism

Presenter: Tim Hague Sr., (RN retired)

‘My goal would be to have all my patients become athletes’  - Dr. Borys, a movement disorders neurologist 

The goal of this session is to provide people living with Parkinson’s the tools to understand the mindset of a seasoned athlete in the area of Wellness. We will look at wellness from a holistic viewpoint considering all of its spheres. Exploring the mindset of the traditional athlete we will discover what sets that individual apart and how we can incorporate their thinking into our personal plan of action to live well with Parkinson’s disease.

Learning objectives:
  • Craft your plan of action in living well with Parkinson’s;
  • Gaining POIS2E as you learn a holistic approach to caring for the whole you;
  • and discovering again the ‘secret’ hiding in plain sight – wellness - what the research has said all along.

Session C: Tools for Activism

Presenter: Martin Taylor

The session will look to outline and assess the various tools available to PwP to interact and engage with research activism and further demonstrate how that activism can be leveraged to influence the PD research agenda. Further it will inform as to how these platforms can be used to educate and empower the patient community to have a voice in the work for which they are the ultimate stakeholders.
  • Social Media - Peer sharing of research articles on platforms such as Facebook and Twitter and how this can help inform and empower the patient community, including direct interaction with researchers and erudite patient advocates.
  • Blogging - How the sharing of personal experience and viewpoints can similarly enlighten all stakeholders in PD Research.
  • Local Research Interest Groups - Participation in local research interest groups including the success story of the Edinburgh Research Interest Group and the potential breakthrough that occurred when a member revealed a remarkable ability at a group meeting.



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