1 Introduction

Scleroderma is a rare autoimmune disease that hardens dermal tissues in a variety of presentations. Researchers have shown interest in patient engagement with this community as many of us with lived experience have been asked to share the impacts of the disease on our lives. Ongoing experience in patient organizations and my role in this study (Aguiar et al. in this special issue of The Patient [1]) provided a unique advantage for retrospectively comparing the engagement attempts of other studies to the commendable efforts of this team. In doing so, I offer some insights to improve patient- oriented research (POR) in order to protect patient vulnerability while achieving optimal impact from mutual partnership.

2 Challenge the Status Quo

As an equal partner, I participated in every step of the project when able to. A happenstance introduction between myself and the PI at a conference led to discussion about partnering on designing this study [1]. Acknowledging that the ethics approval process creates an inherent bias by requiring approval before approaching a patient partner, we decided to meet and share expectations before formal submission, ensuring inclusion of community representation during proposal inception.

Recent movement towards including patient perspectives in health research has led to the development of guidelines for measuring the level of patient engagement achieved on a research project or clinical trial [2]. Instead of depending on one source of patient inclusion, this study incorporated multiple patient engagement methodologies at varying levels; two patient partners, a focus group, and distribution of a discrete choice experiment survey to the broader community [1]. In doing so, the team learned from a broader spectrum of representational experiences than if depending on a single partner or method.

3 Working with Patients as Partners and Minimizing Power Imbalances

I believe the greatest obstacles to successful POR are power and communication. Because the principal-agent dilemma is rooted in the patient-provider relationship, it can be difficult for clinicians and researchers to view patient partners on research teams as equals. The obvious difference in the research setting is that the patient is not present to receive advice but to give it. There are a number of factors that made this project very supportive of patient perspectives, most of which stem from a conscious effort to be open in communication and share expectations as researchers would with any other team member.

3.1 Treating Patient Partners as Equals

3.1.1 Avoid Tokenism

Remember that the community partner is contributing their time and expertise, they are not there simply to meet criteria for the research to be given POR validity. Having participated in other studies as a patient, it is frustrating and disrespectful when a concern, opinion or question is voiced only to be dismissed without reason. Those experiences have left me feeling excluded, scrutinized, dehumanized, and vulnerable. Our study took patient partnership seriously which was exciting, empowering and, in hoping to have a positive impact on future patients, helps to give meaning to the experiences of suffering and frustration living with a rare diagnosis.

3.1.2 Share Stories

In this study I felt included, important, respected, valued, supported, but vulnerability was still experienced. Patient partners will inevitably share detail about their lived experience to an extent that is not expected of the rest of the team. It is crucial that researchers remember that the hypothetical patients they are studying are real people who are also at the table.

Allocate time from the beginning of the project to building group relationships by sharing more about yourselves than role descriptions. Introductions that only emphasize academic achievements of the clinicians or researchers while reducing the community partner to the role of ‘patient’ is reflective of ingrained power imbalances that contribute to lack of trust. When everyone shares their motivation for participating and equal respect is given to the unique skills and experience of the community partner, it humanizes the team and initiates shifting the balance of power to one that fosters inclusion.

This process of sharing and learning about each team member should be woven throughout the entirety of the study as it will help build trust and facilitate mutual understanding. At various points in study design I realized that the rest of the team had little awareness of what might influence or prevent a patient’s participation. Their open honesty about this provided an opportunity for me to share my experience and what I had heard and observed from other patients in my community.

3.1.3 Knowledge Translation is Bi-Directional

While practicing mindful team building, expect to learn together. The movement toward POR is an acknowledgement that patients are the experts of their disease, and while researchers are experts in their scientific field, together these communities can make a meaningful difference in each other’s work and lives.

Scientific knowledge of a patient partner, while valuable in creating efficiencies, is not essential. Do not underestimate the intellect of partners. Effective communication is key. Check your ego, avoid selective inclusion and condescending tone. Explain acronyms, describe processes, avoid academic jargon where possible, and provide honest intentions for the application of research outcomes. By giving considerate opportunities for everyone to share their understanding and ask questions you may find the benefits of patient involvement outweigh the effort of having to restructure communication style.

Evidence that knowledge gaps are not limited to the patient partner was seen in how often the questions I asked uncovered areas of inherent research bias that would have otherwise gone unnoticed. There were instances when I presented that aspects of living with scleroderma had been overlooked. Keeping an open mind, the team took these opportunities to actively listen, educate themselves and adapt to new information, reporting afterwards that my knowledge added value and positively impacted study design.

3.1.4 Compensation

Treating patient partners as free labour is contradictory to the guiding principles of community engagement. The population being researched likely faces barriers to wellbeing and their participation is an opportunity to create social equity through an employment opportunity; their time is no less valuable than other team members. Not every partner expects, wants or needs compensation, but ensure that this conversation is had with any prospective partner so that a mutual agreement can be included in your project budget.

3.2 Meet Patient Partners Where They Are At

3.2.1 Literally and Physically

Be considerate of the effort required for a partner to join meetings as they likely have other obligations and priorities before the project. If meetings happen in person, make arrangements at times and places that work for everyone. This team often met at coffee shops midway between each member’s working location. This equalized effort, generalized our patronage, and removed historical power imbalances associated with academic or health care institutions. We also often used video or teleconference calls to eliminate travel time and accommodate our differing schedules when in-person meetings were not possible.

3.2.2 Workload Management

Allow the patient partner to determine their level of involvement and discuss realistic contribution expectations. This team included me in every email, progress update and request for feedback without the expectation that I would provide any. This approach gave me the opportunity to stay informed, have complete understanding of the process, and engage whenever it was necessary and possible.

Including more than one patient partner, and more than one method of patient engagement, helped this project avoid the bias of a single voice and provided inclusion of multiple perspectives. When my perspective was desired, it helped to have deadlines that were a week or two away so I could give thoughtful input without delaying the study or missing an opportunity to influence the direction of the next phase. I was also not responsible for carrying any of the workload alone. Though I chose to contribute actual work reviewing and editing documents, drafting abstracts, assisting with knowledge translation and giving presentations, reasonable deadlines were negotiated, and support was always available.

3.2.3 Reconsider Expected Deadline

Understandably, strict timelines are often applied to clinical trials or research studies due to funding. However, this team quickly learned that partner feedback often resulted in additional time to rephrase patient facing materials, adapt study design, and for volunteer patient organizations to disseminate information and receive responses. Reducing delays required developing timelines with everyone in mind and regular check-ins. Moving too quickly, or under time pressures, often led to missed opportunities for feedback and future delays when issues were identified.

We also experienced how stigma from both communities created delays. Experts outside of this team were often unresponsive to patient partners request for information. Similarly, some patient organizations were hesitant to disseminate surveys to their contacts upon the request of researchers with concern that the study was not truly patient oriented.

4 Conclusion

These observations highlight the historical power imbalance that makes approaching this work with integrity and respect so important. Connections to each other’s communities should be supported by the appropriate team members and eventually, we may see stigma dissolve and valuable collaboration become commonplace.