Learning to work together: experiences of researchers and family partners in a patient-oriented research team

Abstract

Background

The BetterLTC research team holds ten years of experience conducting patient-oriented research. We are an intergenerational multicultural patient-oriented research team. Our team comprises researchers, clinicians, trainees, and family partners (experts by lived experience).

Main text

In this commentary, we come together to share our experiences as researchers and family partners: what we think about and how we live patient-oriented research. We recorded and explored our experiences from the ground up. We came together to thematically analyze our recordings, and we encountered themes within our conversations. From our shared experiences, we make visible the common themes of balancing diverse expectations, raising the voice of diverse experiences, and valuing relationship building. As a team, we have encountered challenges within the academic culture of high productivity expectations. We navigate challenges by acknowledging the diverse expectations within the team and valuing each person`s perspectives and our time together for relationship building.

Conclusion

We learned that patient-oriented research is more than following policies and guidelines for engaging family partners; it is a way of being in the world that cultivates curiosity and openness to surprise.

Plain English summary

Through working together, we create spaces for listening, learning, and developing meaningful research. We are a patient-oriented research team, and during our time together, we have learned the importance of cultivating openness to diverse perspectives and building ethical relationships with each other. In this commentary, we share our experiences as an intergenerational patient-oriented research team. We are a team of researchers, clinicians, trainees, and family partners (experts by lived experience). Patient-oriented research is not free of challenges, as the academic culture often pushes for high productivity, not supporting the time needed to engage with all team members. Our team recognizes the value of conducting patient-oriented research and acknowledges the positive impact it can have on healthcare systems.

Background

The strategies for patient-oriented research in Canada is recent, dated from 2011, and has the pillar to value lived experiences as a way to instigate the development of meaningful research to act on healthcare systems [6, 8]. With a shared goal to act on the healthcare of older adults, a patient-oriented research team in Canada began development in 2013 under the guidance of Dr. Roslyn Compton. Since that time, our team has evolved with new members, new provinces and countries, and increased expertise in conducting patient-oriented research focused on improving the lives of older adults. Our team is now known as BetterLTC (Better Long-Term Care). We look for people passionate about caring with older adults, and people find us through our website or a team member who brings another friend to the team. Team members choose for how long and how much they want to engage. We aim for collaboration and shared leadership, in which different team members may lead different research projects.

BetterLTC is an interprofessional, interprovincial, and international patient-oriented research team. Team members identify with diverse communities, such as the Queer, black, newcomers, Indigenous, and disability communities. We are also trainees, academics, community members, and clinicians. Our ages range from 18 to 91 years, manuscript author`s age ranges from 30 to 70. Researchers, knowledge users, family partners, and collaborators are in nursing, psychology, education, nutrition, pharmacy, dentistry, medicine, health economics, physiotherapy, kinesiology, occupational therapy, and business. Our partners include for-profit and not-for-profit organizations. BetterLTC is dedicated to transforming the health and well-being with older adults. By valuing lived experiences and fostering innovation, collaboration, using an asset-based approach, and developing patient-oriented research with qualitative, quantitative, and mixed-methods.

Even though lived experiences are essential in patient-oriented research, the value of lived experience has not always been recognized and appreciated within academia. There are different paradigms that influence the understanding of what constitutes valuable knowledge in academia [1]. The positivist paradigm relies on objectivity and dismisses lived experience [17]. Even though diverse ways of understanding knowledge have been gaining ground in academia, positivism still has a strong influence on healthcare research.

Patient-oriented research teams often face the challenge of being immersed in an academic culture that values positivists’ ideals of objectivity and a neoliberalist culture of productivity in universities [18]. Within this context, navigating the academic environment has not been a simple exercise for our research team, which is diverse and believes in the time needed to build relationships and value lived experiences. The academic environment promotes high productivity in limited time and measurable outcomes [18]. We have strived to be successful in the research we do, yet we often need extensions to complete our work. We are required to explain what our research team does and validate the contributions of family partners in the research team. We often have to explain that family partners are seen as researchers as well and that we all contribute to the undertaking of research. For example, family partners have been involved in data collection and qualitative data analysis.

In our research team, we think of ourselves as both researchers and contributors with lived experiences (regardless of our label on the team). We all share our experiences to inform the research we do. There is a certain vulnerability in sharing experiences, and we have come to realize that we need time to build the relationships and trust to share experiences, think with our experiences, develop research, and implement it in the healthcare system. For our research team, not only developing research but acting on it to instigate change is important. From this perspective, the research we do has passed the idea of objective discoveries to be “future-forming” [10]; forming the healthcare system that we would like to see through our collaborative way of doing research.

Learning how to work together has been a continuous process that began more than ten years ago. Some team members joined our research team later in the process. We became a stronger team with a higher level of engagement with family partners because we have worked on, and we continue to work on developing meaningful relationships among team members. We focus on understanding the unique experiences that brought us to our research and the experiences we live together that continue to motivate us to move forward.

Setting the context

When we are meeting over Zoom, each one of us begins to share what has happened during our day or week. Most of the time, our conversations begin by talking about our pets: cats, dogs, horses, rabbits, and chickens always seem to grab our attention. Katie says we spend a large amount of time ‘not doing research’. Why would a research team spend so much time talking about pets and not go directly to the point and begin discussing papers, grants, and presentations? As much as each one of us could argue that our pets are simply irresistibly charming, the reality is that we value building relationships with one another. Getting to know our pets is a way of getting to know each other. We approach patient-oriented research by valuing each person in our research team as who we are, and not only what each one of us can contribute academically to our research projects. The time we spend talking about our pets is as important as the time we spend discussing our patient-oriented research projects.

Patient-oriented research is a collaborative approach to research with patients, researchers, and healthcare providers with the intent to meet the challenge of quality healthcare and build equitable healthcare systems by valuing what is important to patient partners [6, 8]. Within our team, consumers or patient partners identify themselves as family partners. Family partners in our team are older adults and/or persons caring with older adults. As our research goes beyond a focus on healthcare issues, and expands to focus on well-being and supporting older adult`s choice, older adult team members do not see themselves as patients. They have adopted the language to name themselves as family partners, because they see themselves as partners with older adults and families.

We co-develop research and family partners choose how much they want to engage in the research process. Some engage from the ground up, since the grant writing process and continue to be engaged during data collection, analysis, writing for publication and knowledge dissemination. In addition, family partners have equitable, free access learning opportunities, including ethics, data management, patient-oriented research approach, sex and gender in research, webinars, methodologies, data collection, data analysis, and knowledge mobilization. Family partners are offered an honorarium for their contributions to the research according to Saskatchewan Centre for Patient-Oriented Research guidelines. However, not all family partners accept honorariums due to tax issues. Still, our team negotiates ways for compensation, for example, travel assistance to support attendance at conferences.

Patient-oriented research values diverse perspectives, knowledge, experiences, and trusting relationships. Trusting relationships are vital for conducting ethical research [3]. Taking a relational approach to ethics, relationships are essential to ensure ethical research that values all persons involved [3]. Within a patient-oriented research context, we argue that a relational approach is crucial so that everyone engaged in the research feels an open, supportive, and trusting space to contribute.

In this commentary, we make visible how we engage in patient-oriented research. Thinking about our experiences that bring us to patient-oriented research and experiences doing patient-oriented research, we highlight what we have learned. This approach to doing research may be considered untraditional and time-consuming, yet, for our team, it is rewarding. The goal of this commentary is to show how ways patient-oriented research can be enacted in academia. We discuss the expectations for researchers in academia and the diverse experiences of family partners as we turn to our stories. Looking for common themes across our experiences, we contribute to informing new ways of doing research and supporting patient-oriented research teams. We conclude with possibilities for sustaining a patient-oriented approach to research.

Main text: exploring the meaning of patient-oriented research through personal experiences

We are a diverse research team. Our ages range from 30 to 70. We come from and work in different parts of the world (Canada, Australia, and Brazil), and we recognize how unique each person’s way of thinking is. By valuing our diverse perspectives, we engage in reflexivity to understand our personal motivations and biases as an essential step when conducting research [9]. Each one of us has our personal reasons and motivations to engage in patient-oriented research. We believe that understanding our personal motivations and interests makes us stronger. In our team, every person is seen as a researcher and persons with lived experience. We see ourselves as persons with assets, strengths and skills within the team, rather than defined roles such as principal investigator, trainee and family partners.

Roslyn naturally came to patient-oriented research as she understands life is lived through stories, both told and untold. Attending to and honouring the stories of older adults has always been a part of Roslyn’s life as she lived alongside her grandmother. As her grandmother shared her stories of wanting to remain in her own home, and healthcare providers, some family members and friends told parallel stories of wanting her grandmother to move into a residential care setting, the importance of the lived experience and how these experiences are integrated into the research process came to the fore.

Katie views patient-oriented research as a person who lives with a disability. Coming from that perspective the importance of involving those who are most impacted by research in the research process is particularly saliant for her. Amplifying marginal voices through research collaboration is a large part of what motivates the patient-oriented research work that Katie engages with.

Michelle realized the impact that stories could have as her sister’s story of trying to access medical assistance in dying resulted in changes to law in their home country of Australia. This understanding led Michelle to facilitate patient-oriented research and to encourage the listening to and learning from family partner stories.

Alison observes what is happening to her family and friends, recognizing that they are patients at times and that what matters to them also matters to her. No matter what role in life they have, everyone is a patient at some stage and, therefore, should have a voice in research that will ultimately affect them.

Mariana carries her stories of living alongside her grandparents in Brazil and working in communities. She recognizes the experiences of persons who struggled with access to education, like her grandparents, and understands that stories of low literacy should not determine who gets to be listened to within the healthcare system.

Shawn has the unique perspective of only knowing patient-oriented research as the research process and being trained and mentored in the patient-oriented research space. He came to understand the patient-partner voice as a necessary part of the constructivist work of research and part of the process that leads to an empowered change-making community. He’s witnessed the transformation of the collaborating partner from feeling ‘present’ in research to ‘I am powerful, and I can make things change.’ Shawn is motivated in patient-oriented research by processes that produce equity and inclusivity, destigmatize, address disempowerment and marginalization, diversify, and provide evidence-supported patient-informed choices.

Marilyn reflects on her nursing practice and recalls going to conferences and being impacted by patient’s stories. As a retired nurse, she learned from patient’s stories daily, and these stories guided her practice. As a daughter, she supports her mother’s choices in growing older in place and sees patient-oriented research as an opportunity to support people’s choices.

Marlene recognizes the power of stories and the importance of connecting with people to listen to them. As a retired nurse, Marlene also carries patient’s stories with her as a family partner. As a daughter, she lives alongside her father’s stories living with dementia and recognizes how her nursing background has been helpful in navigating healthcare. Marlene believes in the need to listen to all the voices of people who navigate the healthcare system.

Jane believes in the power of continuing advocacy. As a retired occupational therapist with research experience, she recalls that research can be disconnected from the benefits for patients to only serve academic interests. Jane wants the voices of patients to be heard and acted on to support change to improve the wellbeing of older adults and their families.

Themes across our experiences

As a research team with more than ten years of patient-oriented research experience that has been invited to present and mentor new patient-oriented research teams, we believe that sharing our experiences can be valuable to other teams beginning their patient-oriented research journey. By valuing the multiplicity of experiences within our team, we came together to discuss our ongoing and evolving journey of doing patient-oriented research. We recorded our conversations, and we looked for resonances among our stories of experience. The trainee Katie led the conversational interview with researchers, and the trainee Mariana led the conversational interview with family partners. All team members contributed to the thematic analysis of the data [4]. Team members read the transcripts and highlighted commonalities. Mariana grouped the pre-identified codes with the input of team members to generate themes. All team members reviewed the themes generated. Mariana led the writing of the themes, including quotes from team members’ transcripts in quotation marks. The common themes across our experiences were and continue to be: Balancing diverse expectations, raising the voice of diverse experiences, and valuing relationship building.

Balancing diverse expectations

As we listened to our stories, we noticed expectations that were placed on ourselves, our team members, and the research we do. The researchers in the team discussed how there has been an increased awareness of patient-oriented research, yet limited adaptations in the academic environment to support patient-oriented research teams. Family partners discussed how the expectation of higher involvement in research was, at times, an exciting experience filled with learning and, at other times, overwhelming. In addition, both researchers and family partners discussed the expectation to impact changes in healthcare, while recognizing that the mobilization of knowledge from research takes longer than what we would like it to.

Alison is a senior researcher who is beginning her journey in patient-oriented research alongside our research team. Alison notices herself drawing to the traditional ways of doing research without family partners because they are “familiar and easier” for her. The research team then discusses how the academic expectations to demonstrate high productivity were not in accordance with patient-oriented research goals, which are often more time-consuming. From this perspective, it is easier to stick to traditional ways of doing research. Roslyn says there must be a recognition that it takes longer to do patient-oriented research, and in order for this recognition to happen researchers need to keep doing this research and advocating. Katie reminds the team that patient-oriented research may not be the best fit for all researchers in academia. She also argues for the need to recognize the abilities and interests of each team member to coordinate activities that people would be motivated to engage with.

The family partners share with excitement the learning they gained throughout the years. Marilyn shares her experiences more than ten years ago when she was hired as a research assistant and attended research training in patient-oriented research. She recognizes that there were “no other expectation [but] to consider yourself a researcher.” On the other hand, she sometimes felt there was too much training, and she wondered, “What am I training for? This isn’t going to be my career”. From Michelle`s and Roslyn`s perspective, the idea of being a researcher has previously been linked to academia, whereas with patient-oriented research, being a researcher links with a personal life experience. The fact that we are all researchers and contributors of life experiences has led all team members to engage in training about patient-oriented research. Family partners reported how the training was important for them to understand they should be recognized and treated as equal team members.

Motivated by the willingness to impact change in the healthcare system, researchers and family partners discussed the expectation of impacting positive change while recognizing that the system seems to move, in Jane`s words, at a “glacial pace”. Shawn discussed the significance of engaging family partners to impact change, and Michelle discussed how the engagement of family partners in the research can impact change faster than traditional ways of doing research.

However, from the perspective of patient-partners, they would like the change to be faster than what is happening. Marilyn recalls when she first joined the research team and thought she would do one research project that would be enough to complete the change she would like to see. After more than ten years of engagement with the research team, she recognized that we might have had some impact, yet it was not as big as she had imagined. Jane also reflects on the days she feels unmotivated. Still, she says she continues alongside family partners doing research because “we are hopeful people”. Marlene then adds, “If you see your life achievement, if you see everything happen within your lifetime, you didn’t think big enough.” We continue to think big. The motivation of family partners motivates us all to continue.

Raising the voice of diverse experiences

Mariana recognizes the importance of “perceiving the value of working together, sharing information, learning from each other, and perceiving that you have something to contribute, we all have.” By valuing multiple perspectives, we appreciate the diversity within the team and reflect on what we have learned from each other. Jane argues that as a family partner, she adds the voice of a real-world healthcare consumer. As we celebrate the diversity within the team, we also understand that different perspectives are part of a healthy team dynamic. Marlene says “Someone not agreeing with me does not feel like it’s an attack on me at all, and I think that the more we have those conversations, the more everyone feels that same ability to see someone else’s perspective without feeling that it’s a personal attack on you.”

We acknowledge the importance of raising the voices of each team member and participant in our research. We reflect on the risk of tokenism both in family partners joining the research team just to meet a criterion for funding purposes and the risk of participants in the research also being used as a token just to confirm researchers’ pre-conceived ideas. The team recalled a project in which family partners took notes on the margins of a quantitative form. They discussed the importance of their non-academic perspective and raising participants’ voices in the research. With participants’ consent, family partners took notes of what participants considered important instead of remaining restricted to ticking a box. Family partners recognize that their non-academic perspective is important when raising the voice of consumers of the healthcare system.

As we develop research and move to knowledge translation strategies, we reflect on the importance of developing research that will not remain restricted to the walls of academia. For this reason, we pay attention to language as an essential way of raising voices and discussing our research with diverse audiences. From Shawn`s perspective, “language just is not a neutral thing. It always has action.” Family partners also discuss how their perspectives are important when writing for publication or conducting presentations to ensure that the article written or presentation can be understood by lay audiences and engage a wide diversity of people. This is key to making research more accessible and actionable. The more people who can understand the research, the more people who may be able to use the research.

Valuing relationship building

Marlene remembers a road trip she did with the research team at the beginning of her journey as a family partner. Marlene recalls feeling shocked that she was being treated as an equal. The brainstorming during the road trip to a long-term care led to conversations about what family partners considered to be important for older adults living in long-term care homes. The points and questions raised by family partners informed the research project focused on investigating the quality of life of older adults living in long-term care. During the road trip, Marlene felt Roslyn was genuinely interested in listening to her opinion.

When feeling that their opinions are valued within the research team, family partners explained how their willingness to continue to contribute increased. Roslyn shares the significance of “the team taking away a greater capacity for themselves individually, but also that confidence in the sense of belonging somewhere that you fit”. Building relationships and cultivating a sense of belonging within the research team has always been Roslyn`s priority.

Katie shares how it has been an interesting experience for her, as a researcher trainee when she joined the patient-oriented research team, to prioritize the relationship among team members, meaning that some research team meetings may be focused on sharing experiences and the academic outcomes are sometimes delayed to other meetings. She says “that way of thinking is a totally different way of thinking, and it`s taken me a while to wrap my head around it. But I absolutely love it now that I’ve gotten used to it.” Michelle highlights the importance of involving trainees in patient-oriented research and the positive impact this will have in the future. Jane echoes Michelle’s perspective and says she “really loves working with trainees” and knowing that she will have an “influence on the next generation of researchers”.

Relationship building has been acknowledged as a key component in our way of doing patient-oriented research. Michelle highlighted the importance of relationship building among team members and outside partners by recognizing that these relationships are essential to moving the research forward to knowledge mobilization and changes in healthcare. In addition, family partners reinforced the need to build a trusting relationship with participants when collecting data for the research; they recognized that the quality of the data gathered also depended on how they interacted with participants and how participants felt that their perspectives were being valued.

Marilyn says that one of the things that keeps her motivated to continue to engage with our research team is the social things we do. Family partners recalled road trips, conferences across Canada with beautiful landscapes, potlucks, LEGO^® building, and fun activities we do. Jane reflects on how our research team is unique, and Marlene says, “I do think that what we have is something special, and that not every team comes to the understanding and the level of friendship that we have.” Family partners feel that their opinions, who they are, and all the experiences they carry with them are valued in the research. They look forward to our next social activity, and Marlene says “I can’t wait until all the snow melts, the grass turns green, and you all come out here for Fire Pit again.”

Reflecting on the themes across our experiences

Our team recognizes we need to establish trusting relationships before we share experiences. For this, we use a relational approach in our work that values a nonhierarchical structure, shared leadership among team members, and building trusting relationships as an ethical practice in research [6, 12]. We acknowledge that being mindful of power relationships is crucial to developing ethical research. The lack of dedicated time to build relationships with family partners is a critical issue that speaks to the lack of support for family partners and adds to team imbalances [16]. We intentionally create moments in our team to foster relationships. For example, our team meetings always start with a check-in, and sometimes the needs of team members are more important than the research needs of the day, so the conversation is about supporting a team member.

The continual engagement of family partners throughout all phases of the research process is crucial for developing effective patient-oriented research that changes care practices according to the needs of people [16]. One example of this is family partners completely changing the look of a project when they told the academic researchers on the team that what mattered to long-term care residents and family members, was quality of life. Therefore, any changes should be considered through that lens. The result was a project focused on quality of life in long-term care and considered what residents and family members saw as important to quality of life. Family partners in our team have shown us that knowledge translation must be integrated throughout the research process, inclusive of recognizing and valuing their experiences. We have come to see the essentialness of translating the knowledge gained from our research. Family partners ensure the knowledge mobilization activities are accessible to the public, often via checking to make sure the academic researchers are not speaking in jargon. Further, so often they mobilize knowledge simply by telling others about this exciting thing they are doing with academic researchers. They tell people about what they are seeing, and that gets other people excited about a project and leads to opportunities to share our work broadly.

In our research team, family partners reported feeling meaningfully engaged throughout all phases of the research process. Nevertheless, they recognize that the active engagement of family partners may not be a reality for all research teams. Some family partners mentioned going to meetings outside of our research team that were filled with researchers in the room, and they asked, “Where are the family partners?” Unequal power relations that primarily favor the researcher’s goals represent a tokenistic presence of family partners, which leads to research that only confirms the researcher’s previous intentions with limited or no meaningful change [14]. Tokenism is an ethical concern in patient-oriented research [5]. Tokenism often happens when power relationships in the research team are unbalanced [14].

In our team, we consistently ‘call out’ tokenism, attending to when it might happen and how we, as a team, can prevent it from happening. Roslyn recalls an example of a meeting with persons engaged in conducting patient-oriented research, and the family partners sitting beside her told Roslyn that they were not understanding the presentation. Roslyn raised her hand, and asked the person who was giving the presentation to speak in a language that all persons in the audience would understand.

Researchers often face the pressure of high productivity expectations in academia and limited time available [18]. Nevertheless, the eagerness to meet expectations should not become a reason for undervaluing the relationship with family partners. This has caused us to consider success differently than many other academic research teams. For us to be successful means that we have used multiple lenses to respond to the research question, if we have been flexible and used lived experiences to guide that journey that has an outcome that promotes change, we feel that we have done and been our best. It may not be measured in academic publications, but in expanded outreach, networking, collaborations, growth and moving forward, where we see potential or actual change.

In our conversations as a team, we have learned the importance of understanding and acknowledging the expectations that each member may have. Family partners entered our research team with high expectations for change. Reflecting on our experiences, we now understand the importance of discussing these expectations and what the research process entails. Balancing expectations among actors involved in the research is necessary as the expectations among participants when they enter the research may be higher than what could be achieved by the study [2].

From a similar understanding, while motivated to benefit the research team, family partners may feel compelled to overshare components of their stories that they would rather keep private [16]. From this perspective, a safe space must be cultivated within the team. All team members are encouraged to share what they are comfortable with but not pressured to share more than they want to. In some cases, this means learning new things about team members well in the research process. Further, some family partners may enter the research with negative expectations due to previous negative experiences living alongside healthcare professionals [13]. For our team, understanding the expectations of family partners is a crucial step at the outset of the research process for their inclusion and active engagement. To action this we often use a process of a team member going out for coffee with the person and having a conversation with them. This team member is always someone who is well connected to our work and can establish if the interests and goals of the potential family partner align with the goals of our research team.

Best practices in equity, diversity, and inclusion in research invited our team to reflect on and act on the team composition and recruitment processes. When composing a research team, it is important to have recruitment processes that foster inclusion and offer ongoing training to team members with regard to equity, diversity, and inclusion principles [11]. This is not to say that cultivating a diverse research team is easy. For example, we have often struggled to find persons who identify as male to join our research team. It is worth the effort to keep trying to diversify our research team, however, because diversity in research teams has a significant role in reflecting the varied concerns of the population, who might be impacted by the research studies [15]. In addition, research teams that are diverse tend to have higher community participation and work impact [15]. The diversity in our research team, including the lived experience that family partners add to the research, contributes to developing research that has a higher impact on people who could benefit from the research.

In Canada, there is a lack of an engagement network for family partners, which has a negative impact on their recruitment and retention in research teams [7]. This means that research will be less diverse and less inclusive as family partners leave research teams due to a lack of opportunities and infrastructure to support engagement. Family partners have been integral members of the team for five to eleven years. Our research team aspires to a culture that values the lived experiences of family partners and contributes to the infrastructure and processes for their active engagement.

Infrastructure includes access to finances through universities or grants to reimburse for costs of parking for face-to-face meetings or conference attendance. These funds are traditionally difficult to secure. Processes include reflection on team engagement and education and information on patient-oriented research for new members and how our team works. We actively seek out grants that include funding for family partners. For some family partners, this means being paid as a research assistant; for others, it means opportunities to attend conferences or other events. We often meet online, but when we meet in person, we try to do so in places that are accessible to all members of our research team, and often that is not the university due to steep parking costs and long walks to get to meeting spaces.

Conclusion and implications for research

In a context where researchers are used to the positivist paradigm and conducting research in a fast-paced manner, there is a risk of having family partners in a research team as a token; they are not meaningfully engaged, just there to meet funding criteria. From this perspective, most researchers may become aware of what patient-oriented research means, but not everyone knows how to engage family partners in a meaningful way. Patient-oriented research can be challenging and there can be conflict to navigate. The very processes of established research methods may themselves become a barrier.

While acknowledging the challenges of doing patient-oriented research, as a team, we honour the process, and we do our best to remain aware of each step to ensure family partners involvement begins and continues throughout the research process. Our team recognizes that the process of doing collaborative research with academics, trainees, clinicians, and persons with lived experiences is valuable. How we, as a team, engage all members in research is critical so we can shift from tokenism to meaningful engagement throughout the research process.

The active collaboration of each team member ensures patient-partners’ active engagement. For example, there is a need for acknowledgment that patient-oriented research holds different values that may not align nicely with the historical academic enterprise. Patient-oriented research, at least as we do it requires relationship building, time, and teamwork that often results in a slower pace of research. Patient-oriented research keeps us closer to researching topics and actioning knowledge that matters to people. This means that the goal is not mainly to produce academic publications; patient-oriented research tends to result in more actionable research and teams that include people who are ready to champion the research results. There is a need for a culture change in academia that recognizes that lived experiences are as valuable as academic knowledge. A culture change in which patient-oriented research teams are encouraged within the academic structure with funding and support.