Patient engagement in research: lessons learned from CAPTURE ALS, a longitudinal observational ALS study

Area of Science:

• Patient and Public Involvement in Research
• Health Services Research
• Longitudinal Observational Studies

Background:

• Patient engagement in research (PEIR) is ethically and practically important, but evidence for best practices is limited.
• The CAPTURE ALS study aimed to investigate PEIR implementation in a longitudinal observational setting.

Purpose of the Study:

• To investigate patient engagement in research (PEIR) as implemented in the CAPTURE ALS study.
• To identify best practices and lessons learned from PEIR initiatives within a real-world research context.

Main Methods:

• Utilized three engagement initiatives: community letter-writing, patient/caregiver focus groups, and a participant partner advisory council (PPAC).
• Employed retrospective data analysis from study documentation.
• Applied the International Association of Public Participation (IAP2) spectrum as a framework for evaluating engagement levels.

Main Results:

• A community letter-writing campaign generated 2401 letters advocating for study objectives and funding.
• Focus group feedback influenced study design and data-sharing plans.
• PPAC collaboration shaped governance, protocols, communication, and engagement activities, encompassing all IAP2 participation levels.

Conclusions:

• Meaningful PEIR initiatives significantly shaped the CAPTURE ALS study.
• Key lessons include early embedding of PEIR, relationship building, flexibility, and seeking diversity.
• Challenges involved funding, time for relationship maintenance, and participant attrition; however, empowerment through advocacy was evident.