The National Institute of Neurological Disorders and Stroke (NINDS) incorporated in their 2021-2026 strategic plan to include the perspectives of people with lived experience (PWLE) with neurological disorders in selecting research priorities. NINDS remains committed to this goal by including PWLE in most workshops, roundtables, working groups, and committees as experts and people whose input directly impacts research priority setting.

To make sure PWLE are included in these efforts, NINDS created a new position called the Lived Experience Engagement Strategist. This person serves as a central point providing the overall strategy, maintaining momentum, and ensuring accountability for inclusion of PWLE across all NINDS work. NINDS also developed a community of practice, “LivedX,” that serves as a virtual collection of resources, tools, and best practices for PWLE engagement available to all NINDS staff.

Stage(s) of Research Process:

• Study Planning: PWLE and their expertise are included at the early stages of developing ideas and priorities for research. They work as respected members of committees, working groups, and panels. They are viewed as subject matter experts whose input is used to develop research priorities and create partnerships.

Who Might Benefit:

• Research Administrative Leaders
  • Can use the NINDS strategy for building an approach that allows for long-lasting engagement of PWLE in research priority setting.
  • Can consider the value of having dedicated staff who are responsible for making sure engagement with PWLE happens across the organization’s research programs.
  • Can consider the development of a collection of tools and best practices for PWLE engagement that can be accessed by all staff.
• Patients, Caregivers, and Patient Advocacy Groups
  • Can use NINDS efforts as an example of the staff support needed to maintain an organization-level commitment to PWLE inclusion.
  • Could use this example to help identify questions to ask organizations or researchers when considering a partnership. These questions can help patients, caregivers, and patient advocacy groups determine if the organization has the necessary resources in place for effective and long-lasting engagement.

Key Takeaways and Examples in Practice:

• Most tools, resources, and processes that support meaningful inclusion of PWLE can be utilized for many different efforts, and these resources should be kept in a central location that can be accessed by all staff.
• Examples in practice include guidelines for selecting PWLE to serve on working groups, codes of conduct for working groups that include PWLE, best practices for engaging PWLE as experts, and template forms to evaluate the inclusion of PWLE.
• Having a dedicated staff support lead for PWLE engagement sends a very visible and appreciated message to PWLE communities and patient advocacy organizations.
• PWLE have contributed meaningful input on multiple efforts, including the Research Roadmap for Myalgic encephalomyelitis/chronic fatigue syndrome, the NIH Amyotrophic Lateral Sclerosis (ALS) strategic planning working group, and ALS public-private partnership design phase efforts to speed up treatment development.
• PWLE have participated in multiple NINDS workshops, including the Non-Profit Forum, a hybrid workshop on Advances in Therapeutics Development for Parkinson’s Disease, the Traumatic Brain Injury (TBI) Classification and Nomenclature Workshop, and the HEAL Initiative workshop on advancing health equity in pain management.

This work was done with the direct support by each of the following partners who advance this work:

• People with Lived Experience of Neurological Disorders who volunteer their time and expertise to work with NINDS as partners
• NINDS leadership and staff
• Patient Advocacy Organization partners for helping NINDS connect with relevant PWLE partners

Keyword(s): Sustainable Engagement & Capacity Building; Collaborative Decision-Making; Methods of Engagement; Researchers; Patients, Caregivers, and Patient Advocacy Groups

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Links to Relevant Resources:

• Contact NINDS about PWLE efforts
• NINDS 2021-2026 strategic plan
• 2024 Research Roadmap for Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) report
• Priorities of the NIH Amyotrophic Lateral Sclerosis (ALS) Strategic Planning Working Group
• ALS Public-Private Partnership for Treatment Development
• Non-Profit Forum Information and Recordings
• Summary of Hybrid Workshop on Advances in Therapeutics Development for Parkinson’s Disease
• Recordings and Summaries of TBI Classification and Nomenclature Workshop

Definitions for each engagement objective can be found in the glossary.