Measuring the success and impact of patient engagement activities: An overview of the PARADIGM patient engagement toolbox

In our recent blog, ‘The power of patient partnerships: Why you should publish patient engagement outputs’, we discuss the importance of patient partnerships and the dissemination of these learnings across the industry. Now, over a series of five blog posts, we switch our focus to measuring the impact of these engagement initiatives on patients, caregivers, and the wider pharmaceutical industry, as well as the relationships between them, using the PARADIGM patient engagement toolbox.

Patient perspectives, along with their desires and often-overlooked needs, are diverse, as are the platforms used by healthcare professionals to understand these insights. Therefore, to drive better healthcare outcomes for all, it is essential to measure the effectiveness of patient-centric engagement activities within the industry through a comprehensive approach to promote the value of patient collaborations in healthcare for future research, recognise areas for further development, and ensure transparency. (1,2)

However, evaluating the effectiveness of patient engagement against specific metrics, such as patient satisfaction, can be complex. (1,3) Additionally, as the outcomes of patient involvement in healthcare are often long-term, it can be challenging to track the benefits of patient-centricity over time. (4) Thankfully, with the acceleration of technological advancements, various online tools and frameworks have recently become available to monitor the success of patient engagement and partnerships. One tool that addresses the needs of all stakeholders is the PARADIGM patient engagement toolbox, designed in 2018. This toolbox includes a monitoring and evaluation framework to assess the ‘return on engagement’ in drug development. (5)

The PARADIGM patient engagement monitoring and evaluation framework has four distinct sets of objectives, encompassing all stakeholders:

Set 1: Improved alignment of product development with unmet patient needs

Set 2: Improved efficiency of the medicines development process

Set 3: Improved quality of evidence generation?

Set 4: Improved transparency, trust, and relationships

These objectives are evaluated based on a wide range of metrics, 87 in total. (5) Some necessitate a quantitative approach, such as structured surveys, for assessing the outputs of patient engagement, while others utilise qualitative methods, such as open-ended interviews, to collect patient feedback. By incorporating both quantitative and qualitative approaches, the PARADIGM patient engagement framework allows users to self-evaluate the implications of patient contributions to the medicines development lifecycle. (2)

This tool stands out from other frameworks due to its adaptability. Users can select the metrics of most value to them, tailoring the framework to best support their specific patient engagement goals and thereby enhancing outcomes for all. (5)

To learn more about the PARADIGM Patient Engagement Monitoring and Evaluation Framework, visit https://imi-paradigm.eu/petoolbox/monitoring-evaluation/. Stay tuned for the remainder of our article series that reviews the PARADIGM patient engagement toolbox.

At Synthesis, we strive to support groundbreaking and innovative solutions that nurture the patient experience and build greater trust in healthcare by fostering productive partnerships. From providing strategic input to maximise the impact of patient engagement to offering specialised medical writing support to raise awareness of unmet patient needs, our services aim to improve healthcare outputs for all stakeholders. Contact us at [email protected] to learn how we can assist your patient engagement activities to drive true systemic change.

References:

1. 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.
2. From PE Metrics Framework to Actionable Tool – What’s After PARADIGM? https://patientfocusedmedicine.org/from-pe-metrics-framework-to-actionable-tool-whats-after-paradigm/
3. IHI Innovative Health Initiative https://www.ihi.europa.eu/projects-results/project-factsheets/paradigm#:~:text=IMI's%20PARADIGM%20project%20was%20set,on%20engagement'%20for%20all%20stakeholders.
4. Abbasgholizadeh Rahimi S, Zomahoun HTV, Légaré F. Patient Engagement and its Evaluation Tools- Current Challenges and Future Directions Comment on "Metrics and Evaluation Tools for Patient Engagement in Healthcare Organization- and System-Level Decision-Making: A Systematic Review". Int J Health Policy Manag. 2019;8(6):378-380. Published 2019 Jun 1. doi:10.15171/ijhpm.2019.16.
5. 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.