Measuring Patient Engagement: The Importance of a Framework
Author(s)
Sarah Daugherty, MPH, PhD1, Rebecca Conto, MS2, Julia Coleman, BA2, Judith J. Stephenson, BS, MS2;
1Carelon, Principal Scientist, Wilmington, DE, USA, 2Carelon Research, Wilmington, DE, USA
1Carelon, Principal Scientist, Wilmington, DE, USA, 2Carelon Research, Wilmington, DE, USA
OBJECTIVES: To assess an evaluation strategy that measures quality, impact, and outcomes of patient engagement activities using a validated evaluation tool and the PCORI Engagement in Research Framework.
METHODS: Adoption of patient engagement activities is growing within health economics and outcome research. Measuring the quality, impact and outcomes of patient engagement is necessary to enhance the partner experience, prove relevance and provide data for return on investment. PCORI developed a 5-domain Engagement in Research framework highlighting characteristics that support positive patient and research outcomes. This framework and its components have not, however, been formally applied in the context of a research study and compared to other commonly used engagement evaluation tools. We administered the Public and Patient Engagement Evaluation Tool (PPEET), a validated instrument, to assess a 6-month engagement with patient advisors who were part of an atopic dermatitis study team. Study team members, including patient advisors, completed the PPEET at the end of the engagement. The PCORI 5-domain engagement framework was utilized to structure the analysis of the PPEET evaluation results and guide additional data collection.
RESULTS: The PPEET assessed the engagement experience from the perspective of the patient advisors and study team members providing contrasting data points on shared activities. This information informed adjustments to future engagement processes. The PCORI framework, however, identified several components not assessed by the PPEET that evaluate return on investment including resource use, pre- and post- capacity and readiness for engagement, and other costs and benefits to partners.
CONCLUSIONS: The PPEET provided necessary but not sufficient coverage across 5-domains of the PCORI framework. The PCORI framework expanded the scope of the evaluation by highlighting key return on investment components. Future evaluation strategies should include the PCORI framework to comprehensively guide data collection and generate evidence that can make the case for future industry investments in engagement activities.
METHODS: Adoption of patient engagement activities is growing within health economics and outcome research. Measuring the quality, impact and outcomes of patient engagement is necessary to enhance the partner experience, prove relevance and provide data for return on investment. PCORI developed a 5-domain Engagement in Research framework highlighting characteristics that support positive patient and research outcomes. This framework and its components have not, however, been formally applied in the context of a research study and compared to other commonly used engagement evaluation tools. We administered the Public and Patient Engagement Evaluation Tool (PPEET), a validated instrument, to assess a 6-month engagement with patient advisors who were part of an atopic dermatitis study team. Study team members, including patient advisors, completed the PPEET at the end of the engagement. The PCORI 5-domain engagement framework was utilized to structure the analysis of the PPEET evaluation results and guide additional data collection.
RESULTS: The PPEET assessed the engagement experience from the perspective of the patient advisors and study team members providing contrasting data points on shared activities. This information informed adjustments to future engagement processes. The PCORI framework, however, identified several components not assessed by the PPEET that evaluate return on investment including resource use, pre- and post- capacity and readiness for engagement, and other costs and benefits to partners.
CONCLUSIONS: The PPEET provided necessary but not sufficient coverage across 5-domains of the PCORI framework. The PCORI framework expanded the scope of the evaluation by highlighting key return on investment components. Future evaluation strategies should include the PCORI framework to comprehensively guide data collection and generate evidence that can make the case for future industry investments in engagement activities.
Conference/Value in Health Info
2025-05, ISPOR 2025, Montréal, Quebec, CA
Value in Health, Volume 28, Issue S1
Code
PCR199
Topic
Patient-Centered Research
Disease
No Additional Disease & Conditions/Specialized Treatment Areas