Epilogue: What Works and How

This Is What We Found

• Patient-led research will be an essential component in technology-informed futures where patients will become key stakeholders in co-design, evaluation, and implementation.
• The testing and categorizing of methods as part of SoE led to new theories, created specifically to understand health experience and health systems from patient perspectives.
• New theories created new frameworks for peer research methods that build the capacity of patients to analyze and interpret narrative data from a patient perspective.
• The SoE creates new roles and partnerships in health research where patients become full partners in open innovation and science to democratize science for all.
• In this era when socio-political ideologies of health are being noticed and questioned, emancipatory research that fosters identity empowerment is warranted.

So much is happening, both frightening changes not only for our planet but in democracies that are reversing our time-honoured beliefs in communal values and support. Forces for change are ramping up fast, especially with health technologies that could create reduction in illnesses and extended productive lives where they could enjoy new roles for patients. These changes come with an urgent need to figure out how to introduce the skills needed to be part of health technology innovation and then technology and data literacy. The need for local research to handle wicked problems provides opportunities for community science and expansion of community-based participatory health research. These issues can be supported by new roles for citizens as peer researchers and educators. There are already examples of these new roles emerging in online chronic care networks and online healthcare options.

A Pragmatic Science Framework for the Science of Engagement

A science of engagement is only effective if there is a concerted effort to recognize the signs of change and research that identifies why the change is happening and what we can do to prepare for it. Action research, as part of PAR, grounded theory, and PaCER/peer research are platforms for research that studies what is happening now to explain how to adapt to change and solutions that will lead to new patient roles as collaborators in change. Only patients can ask the right questions, explore solutions, and ensure that everyone has the ability and resources to take advantage of change.

The following is a definition of pragmatism as a decision tool in SoE methodologies, adapted from the University of Nottingham’s Health E-Learning and Media platform (https://www.nottingham.ac.uk/helmopen/rlos/research-evidence-based-practice/designing-research/types-of-study/understanding-pragmatic-research/section03.html):

In inductive peer research as part of SoE, pragmatic decisions about recruitment, research methods, analysis, interpretation, and theory incorporate operational decisions based on ‘what will work best, and why’ in order to find action-based solutions to main concerns of patient populations.

I am both excited by potential changes in health for everyone involved and the potential for new roles for patients. I am also concerned that we are not ready for challenges ahead for health professionals and researchers.

Because SoE focuses on practical solutions to problems from the perspective of those who will use innovative products and services, it aligns with innovation and market driven research design thinking that bring additional business, engineering, and motivation perspectives. This common practical orientation made the peer research bridge between academic research and innovation possible. A pragmatic peer research is not a threat to medical science but a practical companion that brings focus to everyday concerns related to research topics that lead to promising and innovative results.

JEDI and Pragmatism in the Science of Engagement

OCAP (ownership, control, access, and possession) have taken up the challenges faced by equity-seeking groups to own and use their data for the betterment of their groups. The journey to a science of engagement in health research was informed by those most impacted by systemic discrimination. The early pioneers with disabilities fought to control their lives as citizens with rights to make decisions about their healthcare. Populations who were marginalized because of race, culture, gender, and poverty were next to fight systemic discrimination in healthcare. PaCER continues to learn from equity-seeking groups and has also moved into mainstream hospital, acute, primary, community, and population health when it became apparent that the lessons learned about EDI were emancipatory.

The Bridge Between Academic Research and Innovation Is Built on Pragmatic Principles

The last chapter’s peer research bridge between academic research and innovation is symbolic of the challenges of pragmatic clinical trials to identify what works in real life situations from the perspective of patients, care providers and communities. Allemang (2022, https://doi.org/10.1111/hex.13384) explores the need to use the most appropriate research frameworks and methods to solve real-life problems. It is hoped that this science of engagement provides strategies, theory, and methods to justify new directions to embed the practical gaze of patients and communities in academic research.

Finally, being part of peer research is a practical life skill. Those who participate in peer research learn about themselves as observers, decision makers, analyzers, and change agents. They are motivated by being part of a group who want to make a difference. They do this by learning together to understand concerns and to explore ways to address them in ways that help the patient flourish for themselves and others.

Thank you for being part of this journey and good luck discovering new ways to implement a science of engagement in health research and innovation. I look forward to meeting you in manifold groups and hearing about your experiences.

References

Allemang, B., Sitter, K., & Dimitropoulos, G. (2021). Pragmatism as a paradigm for patient‐oriented research. Health Expectations, 25(1), 38–47. https://doi.org/10.1111/hex.13384

Health E-Learning and Media. (n.d.). What is pragmatism? Understanding Pragmatic Research. Retrieved June 27, 2024, from https://www.nottingham.ac.uk/helmopen/rlos/research-evidence-based-practice/designing-research/types-of-study/understanding-pragmatic-research/section03.html.

Marlett, N., & Emes, C. (2010). Grey matters: A guide to collaborative research with seniors. University of Calgary Press. https://press.ucalgary.ca/books/9781552382516/