Parkinson s Advocates in Research Online Course

Transcription

1 Parkinson s Advocates in Research Online Course Part Four: Your Role in Research Presented By: Veronica Todaro Director, National Programs, Parkinson s Disease Foundation Kim and Libbe Erickson Parkinson s Disease Foundation Research Advocates

2 Welcoming Remarks Robin Elliott Executive Director Parkinson s Disease Foundation

3 Your Role in Research Learning objectives: Learn why research advocacy is important in bringing about better treatments at a faster pace Understand the role you can play in research Know what Parkinson s Disease Foundation resources are available

4 Your Role in Research Veronica Todaro Why is Research Advocacy Important? Kim and Libbe Erickson How Can You Play a Role in Parkinson s Research? Veronica Todaro What Resources are Available?

5 Your Role in Research Veronica Todaro Why is Research Advocacy Important? Kim and Libbe Erickson How Can You Play a Role in Parkinson s Research? Veronica Todaro What Resources are Available?

6 Why is Research Advocacy Important? Only people with Parkinson's and care partners know what it s like to live with Parkinson s disease. You have a unique perspective that needs to be included in research!

7 Why is Research Advocacy Important? People with Parkinson s and care partners can play a critical role in changing how research is done and bringing about better treatments at a faster pace.

8 Why is Research Advocacy Important? You can make a difference in changing how research is done and bringing about better treatments at a faster pace by: Educating others about the importance of clinical research and study participation Working with researchers to help best meet the needs of people with Parkinson s

9 Research Advocacy: Educating People with Parkinson s Many Parkinson s studies have trouble enrolling participants, which can result in delays in finding important answers about Parkinson s disease. People with Parkinson s are not aware of studies within their communities, but would be willing to participate if they had information. You can educate others about the importance of clinical research and study participation.

10 Help to identify funding. Research Advocacy: Working with Researchers Review the informed consent form. Develop plan for sharing study results with participants and the public. Advocate for monitoring and making information available to the public. Ideas Funding Protocol Implement- a3on Monitor- ing Analysis and Results FDA Review and Approval Post approval studies Identify the needs of people with PD. Assess how easy or difficult it would be to participate in the study. Discuss and fine-tune recruitment efforts. Provide input through written public comments or as member of FDA Advisory Committee.

11 Your Role in Research Veronica Todaro Kim and Libbe Erickson Veronica Todaro Why is Research Advocacy Important? How Can You Play a Role in Parkinson s Research? What Resources are Available?

12 How Can You Play a Role in Parkinson s Research? Participate in a Parkinson s study Talk to people in your community about Parkinson s research Share information about research with support groups and at events Work with research professionals

13 Participate in a Parkinson s Study There are many different types of studies Your participation is key!

14 How Do You Find Studies? Talk to your neurologist Contact local research institutions Find studies online

15 Talk to People in Your Community About Parkinson s Research Develop and practice an elevator pitch, including why research participation is important Focus on your personal story If comfortable, hand out your contact information so people can follow up

16 Share Information About Research with Support Groups and at Events Start with your support group or local events Present yourself as someone who can answer questions about study participation

17 Hand Out PDF s Getting Involved in Parkinson s Research Booklet Why should I participate in research? What should I do before deciding to participate? Where can I learn more about Parkinson s research? What questions should I ask?

18 Coordinate a Presentation on Parkinson s Research Share PDF s Getting Involved in Parkinson s Research PowerPoint presentation

19 Invite Researchers to Present or Co-Present You: encourage involvement in Parkinson s research and tell your story Researcher: describe studies currently looking for participants and/or discuss results of earlier studies

20 Hand Out a List of Studies Include contact information for appropriate study coordinators Develop list with the help of a researcher or study coordinator or by using study search websites

21 Remember to Follow Up Contact the support group or event organizer to get feedback and find out if interest of clinical research increased following the presentation Let PDF know about the important work you re doing in the community

22 Broaden Your Reach by Contacting Other Local Support Groups Speak with someone from PDF s Parkinson s Advocates in Research program to find additional support groups in your area Keep in mind logistical concerns Group size Familiarity with Parkinson's Availability of audio/visual system

23 Contact Non-Parkinson s Groups Groups may include: civic organizations chambers of commerce senior centers assisted living communities

24 Work with Research Professionals Only people with Parkinson's and care partners know what it s like to live with Parkinson s disease, and it s important that researchers hear what they have to say.

25 Ask to Meet With Researchers and Study Coordinators Contact research professionals you ve met through studies you ve been in Contact PDF to find other researchers in your area Check the websites of local research institutions

26 Tell Your Story Explain your interest in Parkinson s research advocacy and what that means to you Consider using a version of your elevator pitch

27 Offer to Recruit Participants By acting as a liaison between researchers and your network, you can help to fill studies more quickly

28 Ask the Researchers to Present Research can speak about research opportunities and/or recent study findings It s a good opportunity for researchers to find participants for their studies

29 Ask How They Engage People in Research For example, researchers may already have opportunities for patients to: Provide input on study design Help reduce barriers to participation such as inadequate transportation Assist in creating informed consent forms

30 Ask About Patient Advisory Boards With input from people with Parkinson's and care partners, research can be improved

31 Your Role in Research Veronica Todaro Kim and Libbe Erickson Veronica Todaro Why is Research Advocacy Important? How Can You Play a Role in Parkinson s Research? What Resources are Available?

32 What Resources are Available? Getting Involved in Parkinson s Research PowerPoint presentation Getting Involved in Parkinson s Research booklet Order by ing info@pdf.org or calling (800)

33 What Resources are Available? Parkinson s Advocates in Research Online Course Encourage others to participate Organize viewings at support groups A DVD set of all four sessions is available if you wish to show the course at a location with no Internet access

34 What Resources are Available? PDF website Get the facts about clinical research Interactive quiz: What's Your Parkinson's Clinical Research IQ? Examples of research advocacy

35 What Resources are Available? Connect with PDF staff and Research Advocates to discuss ways to get involved There are more than 200 PDF Research Advocates in 42 states These advocate leaders attend one of PDF s Learning Institutes info@pdf.org or call (800)