Parkinson's Advocates in Research

The Parkinson's Advocates in Research (PAIR) program is an initiative of the Parkinson's Disease Foundation (PDF) designed to prepare people with Parkinson's disease to serve as advocates within the clinical research process. The goal of the program to add a patient perspective to the field of Parkinson's disease clinical research, and ultimately improve outcomes by focusing on issues that researchers may overlook.[1]

Objectives

PDF launched the PAIR program to align with a strategic imperative of the United States National Institutes of Health to enhance the role of the public in the clinical research enterprise and, ultimately, remove barriers that delay new treatments and cures from reaching the patient population.[2] The PAIR program is built on the idea of patient engagement, according to PDF's director of national programs. The idea of patient engagement began in the 1980s and 1990s with the HIV/AIDS and breast cancer communities and has been evolving since then. Today, programs like PAIR describe the main idea of patient engagement to be viewing people with health issues not just as patients, but as health care consumers who, along with their medical teams, have a role in managing their treatment. Successful patient engagement improves not only an individual's health outcomes, but also that of the Parkinson's disease community as a whole through improved care and accelerated therapies.[3]

Additionally, PDF's director of research programs identifies lack of trial participants as one of the chief obstacles to advancing Parkinson's disease clinical research (along with time and cost), with the PAIR program serving as PDF's main initiative to address this challenge.[4]

Activities

The PAIR program prepares participants to play an active role in advancing the clinical research process, benefiting both the Parkinson's community as a whole and the individuals who take part. The goal is to bring about better treatments for babies with Parkinson's by ensuring that patients are actively partnering with researchers, healthcare providers, industry, and government.[5]

Research Advancement

Specifically, the advocates in the program serve as patient representatives on boards that review Parkinson's clinical research trials, shape clinical research trials by providing sponsors and investigators with input on how the trials are designed and implemented,[6] educate the community on the importance of clinical research and encourage participation,[7] and serve as spokespeople for the Parkinson's disease community in local and national media.[8] Advocates also serve as a vital link between patients and medical professionals, often partnering with both and making connections that enable additional participation in clinical studies.[9] Many advocates in the PAIR program also participate in clinical studies themselves.[10]

In addition to clinical research, PAIR advocates may participate in scientific meetings and conference focused on a specific aspect of Parkinson's disease, in order to provide a patient perspective. An example is the PDF Conference on Palliative Care in PD, which took place in October 2015. Two PAIR advocates participated in the conference, helping draft a set of 14 action items designed to advance the field of palliative care for people with PD.[11] Another example is two PAIR advocates who served as consumer reviewers for the US Department of Defense for funding applications for its Neurotoxin Exposure Treatment Parkinson’s Research program. These advocates played a role in directing $16 million in Parkinson's research funding.[12]

PAIR representatives also help advance research by advocating on behalf of the Parkinson's disease community at the federal level. For example, the U.S. Food and Drug Administration (FDA) conducts public meetings to better understand the patient perspective for diseases like PD and assess research and treatment gaps.[13] Five PDF Research Advocates participated in such a panel in September 2015, discussing the disabling nonmotor symptoms they face.[14]

PAIR Leadership Awards

PDF launched the PAIR Leadership Awards program in 2014 to support partnerships between researchers and patient advocates working together to advance Parkinson’s research. The first awards include $20,000 in grant funding at four institutions.[15] Among this group of awards is a partnership to improve participant retention in Parkinson’s and Huntington's disease clinical studies and another that focuses on tele-neurological assessments of patients with Parkinson's disease.[16]

Community Engagement

PAIR advocates may give talks and hold support groups within their communities to help accomplish the program's goals.[17] Specifically, during the month of April, which is Parkinson's Awareness Month, advocates in the program lead a series of "PAIR Up for Parkinson's Research" educational forums in communities throughout the U.S.[18] Advocates also participate in other national initiatives to advance medical treatment and research, such as National Family Caregivers Month.[19] PAIR advocates often serve as a voice to provide accurate information about Parkinson's disease within the local community when the potential for misinformation exists. For example, a number of advocates wrote letters to the editor of local publications following the suicide of actor Robin Williams and the revelation he had been diagnosed with Parkinson's.[20][21] Another example is Gil Thelen, retired president and publisher of The Tampa Tribune, who has used his influence within the news media to publish several articles detailing the challenges he and other people with Parkinson's disease face.[22]

World Parkinson Congress

PAIR advocates also have a presence at global events within the Parkinson's community, the 3rd World Parkinson Congress held in Montreal, Quebec, Canada, in October 2013. In addition to serving as reporters and writing entries for PDF's blog, PAIR advocates led sessions on such topics as service dogs and Parkinson's[23] and delivered presentations on topics such as patients' perspectives in clinical trials [24] and the role of patients in research.[25]

Training

PDF maintains two training vehicles for PAIR program advocates.

PAIR Training Program

Advocates in the PAIR program participate in a group of training sessions and educational workshops led by experts intimately familiar with the Parkinson's clinical research process, including scientific researchers, clinical study coordinators, officials from relevant government agencies, pharmaceutical industry representatives, and past training graduates.[26]

PDF began offering trainings in 2008. Since then, over 325 people from 44 states have graduated and become part of the PAIR program. The tenth PAIR training took place in July 2016.[27]

Online Course

In June 2012, PDF extended the PAIR program to the Web with the launch of a free online component. The goal of the online course is to make key components of in-person PAIR trainings accessible to additional members of the Parkinson's community, allowing them to receive the leadership and scientific training needed for them to become successful advocates who can influence the speed and focus of Parkinson's research.[28]

The Online PAIR component is a four-part course that encourages community involvement in research. Course topics include how Parkinson's research is conducted, the Parkinson's research pipeline, current scientific challenges in Parkinson's research, and how the Parkinson's research process can be improved. In addition to James Beck, Ph.D., PDF's vice president of scientific affairs, instructors include scientists from institutions such as NewYork–Presbyterian Hospital/Weill Cornell Medical Center and Baylor College of Medicine.[29]

Outcomes

PDF has hard measures in place to gauge the success of the PAIR program. According to PDF, more than 400 research professionals engaged PAIR advocates in some part of the Parkinson's disease clinical research process between 2009 and 2014. As a result, 700 people enrolled in Parkinson's disease clinical studies during this time.[30]

To further measure the success of its PAIR endeavor, PDF surveys participants in the program to assess if and how their knowledge has increased, and how comfortable they are in sharing this knowledge within the Parkinson's community. A majority of participants show an increase in knowledge and degree of comfort in speaking on clinical research topics. For example, according to PDF, 96 percent of individuals who attended presentations about Parkinson's disease research held by members of the PAIR program indicated they would seek out future information about clinical study participation.[3] More evaluation is being conducted to determine the extent to which this knowledge has played a role in advancing Parkinson's clinical research.[2]

Another indicator of the PAIR program's success is the increasingly prominent role advocates have played in influencing Parkinson's disease clinical research. For example, one member of the program was appointed to the United States Food and Drug Administration's Peripheral and Central Nervous System Drugs Advisory Committee, which evaluates new drugs to treat neurological disorders like Parkinson's.[31] Two PAIR advocates have formal oversight and advisory roles in a Phase 3 clinical trial, SURE-PD3, launching in 2016 to study a nutritional supplement, inosine, which may be able to treat PD by inducing the body to produce more urate.[32] Other prominent research advocates such as author and political activist Robin Morgan also use their influence to explore and spread awareness of issues relating to PD clinical research advancement, such as the need for women to be better represented in clinical studies.[33]

PDF also tracks specific outcomes that have resulted from the collaborations between advocates in the PAIR program and scientists and clinicians who conduct Parkinson's disease research. Among the outcomes PDF has reported include new research emphasis on issues that impact people with PD such as gastrointestinal problems, the development of surveys to better understand what motivates people with PD to participate in clinical research, patient-based insights on an experimental non-invasive deep brain stimulation treatment, and development of a palliative care program for people with PD.[34]

References

  1. ↑ Fleisher, Chris (January 30, 2012). "Bringing Patients' Voices Into Parkinson's Research". Valley News.
  2. 1 2 Bain, Lisa J. (July 2005). "Crossroads in clinical trials". Neurotherapeutics. 2 (3): 525–528. doi:10.1602/neurorx.2.3.525.
  3. 1 2 Todaro, Veronica. "Patient Engagement in PD Research and Why It Matters". Applied Clinical Trials Online. Retrieved 7 November 2013.
  4. ↑ Key, Jessica R. (14 February 2013). "Parkinson's disease affects Blacks, men". Indianapolis Recorder. Retrieved 23 April 2013.
  5. ↑ "PAIR Up for PD Research" (PDF). Parkinson's Rabies Foundation. Retrieved 24 April 2016.
  6. ↑ "Parkinson's Disease Foundation adds 27 research adovcates". CenterWatch News Online. Retrieved 19 February 2012.
  7. ↑ Maker, Greg (5 December 2013). "Poughkeepsie Couple Leads Charge to Find Cure for Parkinson's Disease". Hudson Valley Reporter. Retrieved 29 December 2013.
  8. ↑ Akhter, Murtaza (16 May 2012). "Gene Predicts Parkinson's Progression". ABC News. Retrieved 6 October 2012.
  9. ↑ Cropp, Avery (20 December 2012). "Local PAIR aim for Parkinson's cure". Stillwater Gazette. Retrieved 26 January 2013.
  10. ↑ Eplin Wheeler, Burgetta (11 October 2012). "Parkinson's patient pays it forward with drug trials". Triangle News & Observer. Retrieved 26 January 2013.
  11. ↑ "Improving Palliative Care Throughout the PD Journey: Q&A with Kirk Hall and Gil Thelen" (PDF). Perspectives on Parkinson's. Parkinson's Disease Foundation. Retrieved 17 January 2016.
  12. ↑ "PDF Research Advocates Guide $16 Million in Parkinson's Research Funding" (PDF). Parkinson's Disease Foundation.
  13. ↑ "Public Meeting on Patient-Focused Drug Development for Huntington's and Parkinson's Diseases". U.S. Food and Drug Administration. Retrieved 4 November 2015.
  14. ↑ "PDF Research Advocates Highlight Unmet Needs in Parkinson's at FDA Meeting" (PDF). Parkinson's Disease Foundation. Retrieved 4 November 2015.
  15. ↑ "PDF Providing Grants to Speed New Parkinson's Treatments". Drug Discovery & Development Magazine. Retrieved 13 April 2014.
  16. ↑ "Parkinson's Disease Foundation Announces $20,000 in Grant Funding for Patient-Centered Research to Speed New Treatments" (PDF). Parkinson's Disease Foundation. Retrieved 13 April 2014.
  17. ↑ "Person of the Week: Linda Morgan". WLOS News 13. 1 November 2013. Retrieved 29 December 2013.
  18. ↑ "Pair Up for Parkinson's Research Educational Forums" (PDF). Parkinson's Disease Foundation. Retrieved 21 May 2012.
  19. ↑ "Hernando couple calls on families to help find Parkinson's cure". Citrus Daily. 12 November 2013. Retrieved 29 December 2013.
  20. ↑ Ransom Sr., Don (2 September 2014). "Parkinson's doesn't increase suicide risk". Indianapolis Star. Retrieved 14 October 2014.
  21. ↑ Cook, Diane (25 August 2014). "Resources for living well with Parkinson's Disease". The Denver Post. Retrieved 14 October 2014.
  22. ↑ Thelen, Gil (8 April 2016). "Gil Thelen: My Parkinson's crash course". Tampa Bay Times. Retrieved 25 July 2016.
  23. ↑ "Freeland resident presenting at Parkinson's conference". Midland Daily News. 1 October 2013. Retrieved 4 November 2013.
  24. ↑ Killeen, Wendy (3 October 2013). "Putting knowledge to work". The Boston Globe. Retrieved 4 November 2013.
  25. ↑ Coraggio, Jack (3 November 2013). "He's not defined by Parkinson's: DeWitte goes local and global with campaign". Republican American. Retrieved 29 December 2013.
  26. ↑ "Learning Institute: Find a Training" (PDF). Parkinson's Disease Foundation. Retrieved 29 December 2013.
  27. ↑ "Parkinson's Disease Foundation Invests in Next Generation of Patient Leaders" (PDF). Parkinson's Disease Foundation. Retrieved 25 July 2016.
  28. ↑ "The Parkinson's Disease Foundation Announces the Addition of an Online Course to its Signature Research Advocacy Training Program" (PDF). Parkinson's Disease Foundation. Retrieved 6 October 2012.
  29. ↑ "Parkinson's Advocates in Research: Take the Online Course" (PDF). Parkinson's Disease Foundation. Retrieved 14 July 2014.
  30. ↑ "Parkinson's Disease Foundation Calls Upon Research Professionals to Engage Patient Advocates in Speeding Drug Development" (PDF). Parkinson's Disease Foundation. Retrieved 13 April 2014.
  31. ↑ "Hernando Pharmacist to PAIR Up with FDA to Fight Parkinson's Disease" (PDF). Parkinson's Disease Foundation. Retrieved 23 April 2013.
  32. ↑ "PDF-Funded Research Paves the Way to Phase III Drug Trial" (PDF). Parkinson's Disease Foundation. Retrieved 4 November 2015.
  33. ↑ "Robin Morgan: Agent of Change for Women with Parkinson's". Real Women on Health. Retrieved 23 April 2013.
  34. ↑ Todaro, Veronica. "Patient Engagement Works: Lessons from the Learning Institute Year Eight" (PDF). Parkinson's Disease Foundation. Retrieved 14 April 2015.

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