The PARADIGM patient engagement toolbox: Measuring improved alignment of product development with unmet patient needs

The PARADIGM patient engagement toolbox is a valuable online framework that supports patient-centricity in healthcare. It includes a monitoring and evaluation tool that uses a range of metrics to assess the value and impact of patient engagement in medical development for all stakeholders over time. For an introductory overview of the toolbox, please read our previous blog post, "Measuring the Success and Impact of Patient Engagement Activities: An Overview of the PARADIGM Patient Engagement Toolbox."

The primary aim of the PARADIGM patient engagement monitoring and evaluation framework is to measure the improved alignment of product development with unmet patient needs. To assess this objective, the framework includes various metrics for insights, changes, and impacts.?

To anticipate product development with patient needs, it is essential to assess the insights and changes associated with the short-term outcomes of patient collaboration, which include: (1,2)

• Changes in research staff awareness and understanding of patient's needs, desires, and feelings
• The influence of patients' insights on research decision-making, such as study interventions or information materials
• The number of actionable insights and recommendations made by patient advisors
• Shifts in research priorities and goals among stakeholders

Looking further into the future, PARADIGM’s monitoring and evaluation framework comprises four impact metrics that highlight the long-term effects of patient engagement on aligning product development with currently overlooked patient needs: (1,2)

• The level of patient satisfaction with novel medicines, technologies, or products
• Patients’ willingness to participate in clinical trials
• The degree to which patient insights may promote the value of a medicinal product to regulators and Health Technology Assessment agencies
• Patients’ experience in trials and their perceived burden of participation

Primarily, these metrics can be tracked using quantitative measures, such as structured survey questions and Likert scale ratings, or by categorising patient insights into themes and quantifying them. Additionally, qualitative approaches may be utilised to achieve a more comprehensive understanding of the value of engagement activities. (3) For instance, qualitative interviews or open survey questions directed at researchers or patients might include, "Can you describe any insights you have gained about patients' concerns or preferences through recent interactions or feedback?" or “In your opinion, how has [new medicine] improved your quality of life?" Furthermore, an effective method for obtaining valuable patient insights involves conducting focus groups, such as the SWITCHED ONcology patient discussion. This session explored evolving barriers in cancer treatment, the emergence of novel therapies, and the accessibility of information for both patients and researchers. (4)

Overall, striving for improved alignment of medicines development with patient needs is crucial to producing safer, more effective treatments that better meet patient expectations.

Our team at Synthesis is dedicated to supporting innovative solutions that create meaningful value for patients, the healthcare industry, and society as a whole. By gathering unmet patient needs and sharing these insights, we can assist you in providing credible evidence to regulatory bodies regarding the importance of patient-centricity in shaping healthcare policies that align with patient interests, thereby enhancing satisfaction and participation in clinical trials. Please contact us at [email protected] to discover how we can support your patient engagement activities.

References:

1. Vat LE, Finlay T, Robinson P, et al. Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics. Health Expect. 2021;24(2):491-506. doi:10.1111/hex.13191
2. Vat LE, Finlay T, Robinson P, et al. Evaluation of patient engagement in medicine development: A multi-stakeholder framework with metrics. Health Expect. 2021;24(2):491-506. doi:10.1111/hex.13191. Appendix S2: Patient Engagement Monitoring and Evaluation Framework
3. How To Measure Patient Engagement, Ambula https://www.ambula.io/how-to-measure-patient-engagement/#:~:text=The%20Patient%20Activation%20Measure%20(PAM,utilize%20health%2Drelated%20resources%20appropriately.
4. SWITCHED ONcology Patient Experience Focus Group Full Discussion https://pmlive.com/pmhub/havas_lynx/switched_oncology_patient_experience_focus_group_full_discussion/