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

Figures & data

Figure 1. Impact of data from ALS Talk Project on CAPTURE ALS.

Figure 2. Participant Partner Advisory Council (PPAC) membership, attrition, and recruitment.

Figure 3. Information exchange by theme between the Team and Participant Partner Advisory Council (PPAC).

Table 1. Interactions at Participant Partner Advisory Council (PPAC) meetings.

Themes	Interaction description	Examples
		Activity	Outcome
Study operations	Interactions related to aspect of study operations, including study design, assessment tasks or tools, and the experience of study participants.	Team sharing information: Presentation of aims, technology, and protocol for ‘Digital measurement of gait as a potential biomarker for progression’ sub-study.	Provided PPAC Members with information to enhance the quality of their feedback on the sub-study.
		PPAC sharing expertise and feedback: Detailed feedback on proposed sub-study protocol and assessment tasks provided.	Significant modification of the at-home assessment tasks and protocol. The sub-study was successfully funded, extending the deep phenotyping in CAPTURE ALS.
Governance	Interactions related to the study’s structures, systems, and practices.	Team sharing information: Presentation on the role and importance of a Charter for a scientific study.	Provided Members with information to enable their informed feedback on the CAPTURE ALS Charter.
		PPAC sharing expertise and feedback: Members provided detailed input on the Charter draft, for example, noting inconsistencies, suggesting that roles and responsibilities be defined, and identifying the need for metrics measuring achievements/success.	Prompted revision of Charter documents and discussion within the CAPTURE ALS Team regarding success metrics.
Team building	Mutual interactions focusing on building effective working relationships.	Designated time within meetings for introduction of new Team and PPAC members.	PPAC and Team Members reported personal benefit and learning from interactions at meetings.
Public facing communication	Discussion of information for study participants or for the public.	Team sharing information: Shared details about a public presentation featuring the CAPTURE ALS PPAC.	Information contextualized and affirmed the PPAC’s contributions to CAPTURE ALS.
		PPAC sharing expertise and feedback: Members made suggestions to improve CAPTURE ALS recruitment and identified a need for ‘talking points’ – material to promote the study.	The Team developed talking points. These were shared with Members involved in advocacy.
Knowledge translation	Disseminating knowledge gained through CAPTURE ALS to groups including academic and public audiences.	Team sharing information: Presentation about knowledge translation at academic conferences.	Provided Members with information and context that they used to provide high quality feedback on an abstract and poster presentation.
		PPAC sharing expertise and feedback: Members provided input on an abstract and poster for the 33^rd International Symposium on ALS/MND.	Abstract accepted with CAPTURE ALS PPAC as coauthor (44).
Establishing context	Sharing background and contextual information to support discussions and input.	Team sharing information: Presentation on the research pipeline, using the development of tofersen as an example.	Provided members with background information on research timelines and potential outcomes from observational ALS research. Prompted discussion of time pressures faced by PwALS.

Figure 4. Modified participation spectrum for CAPTURE ALS PEIR.

*Description of participation goals is adapted from the International Association for Public Participation (IAP2) spectrum for public participation (34) and the research-relevant modified IAP2 Spectrum (35).

**Italicized text represents additions to the research-relevant IAP2 spectrum based on current findings.

Johnston W, Magnussen C, Vande Velde C, Luth W, Participant Partner Advisory Council, Genuis SK. Operationalizing meaningful participant engagement in ALS research: Early lessons from CAPTURE ALS. Amyotroph Lateral Scler Front Degener 2022;23:144.

 Google Scholar

Organizing Engagement [Internet]. 2019 [cited 2024 Jan 31]. Spectrum of Public Participation. Available from: https://organizingengagement.org/models/spectrum-of-public-participation/

 Google Scholar

Bammer G. Key issues in co-creation with stakeholders when research problems are complex. Evid Policy. 2019; Aug 115:423–35.

 Google Scholar

Data availability statement

The data that support the findings of this study are available from the corresponding author (WSJ) upon reasonable request.