Abstract
Background: A national online platform for patient, informal carer and public involvement (PPI) in health research/innovation and healthcare improvement in Sweden could potentially help tackle significant challenges for PPI (e.g., enable public representatives to identify relevant opportunities, increase engagement rates and provide professionals with practical guidance on PPI methods and compensation).
Approach: We aim to build and pilot-test a prototype of an online PPI platform (proof of concept) before scaling up to a national platform (product) while taking product sustainability into account. Our research paradigm is Design Science Research [1] using the Double-Diamond model as a practical tool for design thinking [2] as we are first undertaking research to discover, explore and define problem(s), which is then followed by designing and testing potential solutions. The research question guiding us is: How can PPI be facilitated in health research/innovation and healthcare improvement?
We are currently at the very beginning of this endeavor. By identifying similar platforms that already exist (e.g. https://www.peopleinresearch.org/, https://ppinetwork.ie/), we are developing an understanding of potential operating models and challenges [e.g., 3]. During the fall 2024, we facilitated a series of workshops and dialogues to learn about the needs and concerns of potential users in Sweden, including people with lived experience, patient and informal carer representatives, researchers, innovators, and professionals working with healthcare improvement. Everyone was invited to become involved in the design of the platform – either as active co-creators [4] or as consultants at certain time-points in the process, depending on availability and interest.
Preliminary results: The workshops and individual dialogues indicated three challenges that should be taken into consideration for the development of the platform: ethical matters, security and data protection, as well as accessibility/usability in language and functionality. Furthermore, we learned that people with lived experiences would appreciate easy on-boarding (without having to sign-up) and cross links from and to social media. Researchers would appreciate guidance when posting PPI opportunities (e.g., for specifying the role of public representatives and regarding compensation/reimbursement). Patient groups and advocacy organizations would value if they could also post project ideas for researchers and innovators. Professionals working in healthcare improvement would be grateful if the platform could be used free of charge. All potential users would appreciate the promotion of additional education.
Next steps: After data analysis, we plan on delivering (1) a summary of learnings, (2) a mock-up design of the platform and (3) a list of system requirements. Together with identified partners, we will seek funding for building and pilot-testing a prototype before scaling up to a national platform.
References
[1] Hevner AR. A three cycle view of design science research. Scandinavian Journal of Information Systems. 2007;19(2):87-92.
[2] Norman DA. The design of everyday things. Revised and expanded edition. New York: Basic Books; 2013.
[3] An Evaluation of People in Research: A web-based resource. Minervation, 2009 (available at https://ukcrc-org.stackstaging.com/wp-content/uploads/2014/03/PiR-Evaluation-Report-FINAL.pdf, accessed 29 October 2024).
[4] Sanders L. An evolving map of design practice and design research. Interactions. 2008;15(6):13-17. "