Michael McDonald details the importance of partnering with patients in research.

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Patients in all their diverse conditions and settings have experiences of living with illness or other health conditions that can yield valuable insights that contribute significantly to our shared understanding of health, its determinants, and prerequisites.  Certainly some patient insights can be captured when patients are research participants. Yet there remains the reality that academic health researchers are typically the ones who set research agendas and direct projects. If health researchers want to pursue a robust strategy for patient oriented research – as indicated in the CIHR Strategy for Patient Oriented Research – serious consideration should be given to forming patient partnerships in research. This happens, according to the Patient Engagement Framework of Canada’s Strategy for Patient-Oriented Research “When patients meaningfully and actively collaborate in the governance, priority setting and conduct of research, as well as summarizing, distributing, sharing and applying its resulting knowledge”.

Patients can play active and collaborative roles in several parts of the “research ethics lifecycle” – from priority setting and research planning through the active research process to knowledge translation and ultimately to evaluating the research process and results. However, there are some ethical considerations with involving patient partners in research.

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First, if this kind of active partnership is going to succeed in advancing health research, there has to be a trust-based relationship between academic researchers and patient-partners. As we know from the philosophical literature, trust always involves taking the risk of non-fulfillment and even betrayal. Trust involves taking a leap of faith. Here I see two kinds of faith. One is trust in the competence and skill sets of the other.  The second kind of faith is trust in the commitment or willingness to use their skills and experiences to advance the shared research enterprises. There has to be a reciprocal relationship between academic researchers and patient partners, not just blind faith on the part of the latter. Attitudes and actions that strengthen mutual understanding and confidence in research partners ground such a trust relationship. Taking the time and energy to develop a mutual language and communication patterns are essential. This often requires building new skill sets on the part of academic researchers and patient partners. Pre-judgments about what patient partners want need to be challenged by active engagement with partners.

Second, in addition to standard concerns in research about conflicts of interest and confidentiality, patient partnerships raise concerns about tokenism. Are researchers just using patient partners to gain funding but denying them any major role in research planning and implementation? 

Third, patient partners need to reflect on the role they play in their communities. For example, are they legitimating research that could be harmful to the health and interests of their communities or doing something that could be beneficial? Power dynamics need to be realistically appraised and managed. While researchers are authorities in their areas of expertise patient partners and their informal circles of care are authorities about their own lived experiences.

Fourth, attention must be paid to systemic and structural barriers to thriving patient partnerships. For instance, research funding is only available after a grant has been secured and the REB has given its approval. But too often, patient partners are expected to contribute their time and energy gratis while researchers receive salaries for their efforts.  Research sponsors and institutions are used to channeling funding and responsibilities through academic researchers and in the main have not done enough to find creative ways of supporting and empowering patient partners. 

Some of the greatest needs for developing meaningful and effective patient partnerships in research are in relationship to historically marginalized communities. The record of interaction between researchers and these communities has often been shameful and harmful especially in the case of Canada’s Indigenous peoples. Winning and deserving trust requires special efforts on the part of researchers. In my view, it also involves ceding a significant degree of control to those communities. Those of us who served over twenty years ago on the working group whose efforts led to the first version of the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans tried unsuccessfully to secure recognition of collective rights. Fortunately, in later versions this has been addressed with recognition of the major role of Indigenous and other collectivities in shaping research in their communities.

With the necessary trust-building efforts, patient partnerships in health research will succeed in producing the kind of knowledge that makes a significant contribution to advancing health research that benefits patients in ways that are sensitive to their needs and circumstances.

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Michael McDonald is Professor Emeritus, W. Maurice Young Centre for Applied Ethics, University of British Columbia.

This article is based on an October 4, 2019 presentation in Ethics Grand Rounds for the Faculty of Medicine, Memorial University, as part of the Inaugural Symposium of the new Centre for Bioethics at Memorial.