Community Connectors is a monthly series highlighting Ohio State staff members who have shown leadership in partnering with our communities to make an impact. Photo: CCTS Patient & Community Peer Review Academy (photo taken of class with physician, Faculty Emeritus and community champion, Dr. William Malarkey, on Feb. 7, 2020 by Dr. Tanya Mathew).
Tanya Mathew, BDS, MS
Research Specialist, Center for Clinical & Translational Science
Adjunct Assistant Professor, Department of Pediatric Dentistry, College of Dentistry
Chair, Cultural Competency Education, Diversity Council, Wexner Medical Center and Health Science Colleges
As an educator at heart with over two decades of experience with community organizations, in March 2019, I launched the first Patient & Community Peer Review Academy of the Center for Clinical and Translational Science for the pilot grant program. The original goal was to include trained community members in the peer review process of pilot grant applications, inspired by partners at the Translational Research Institute (TRI) at the University of Arkansas for Medical Sciences. For the inaugural Class of 2019, I worked closely with Sharon Cross, Program Director of Patient/Family Centered Care at the Wexner Medical Center to invite/recruit 11 members of our Patient Advisory Council. For the Class of 2020, through a formal application process, parents of pediatric patients (Family Advisory Council) of Nationwide Children's Hospital as well as the Central Ohio community through Facebook marketing applied. I selected a diverse class of 23 from 62 applications. Recently, matched graduates provided invaluable insights toward the early development of university owned inventions through co-design, demonstrating knowledge-transfer beyond proposal reviews. To date, graduates have participated in four pilot review panels. For the upcoming Class of 2021, my vision is to expand the program further with institutional partners, additional roles for community members throughout the research project life cycle and a health equity emphasis.
Why is engaging the community important to you and your work?
I cannot imagine excluding the ultimate beneficiaries of research from actively contributing to the knowledge enterprise within academia as a Diversity, Equity and Inclusion (DEI) advocate who is passionate about inclusive excellence and social justice. Giving voice to the voiceless and vulnerable is a personal mission as a degreed pediatric dentist who is a foreign-born South Asian American woman. I had to overcome many barriers to find my own voice and I know too well, what it is like to be excluded. The inherent power imbalance and elitist culture within the academic ivory tower, where the PI is considered king, is a major barrier to innovation, team science and true partnerships with community. To understand issues and felt needs, we need to reach out to trained, diverse racial, cultural and economic representatives from the community around us. I think it is our moral and social imperative as a public university to demonstrate the value of science grounded within the local context, addressing public concerns with meaningful and relevant research questions and prioritizing the elimination of health disparities and inequities.
With respect to my work at the CCTS, we are funded by the Clinical and Translational Science Award (CTSA) from the NIH National Center for Accelerating Translational Science to basically accelerate the process of translation to improve human health. In our field of science, translation is a broad and inclusive term that describes the process of "carrying across" (from Latin). So, translation is "the process of turning observations in the laboratory, clinic and community into interventions that improve the health of individuals and the public from diagnostics and therapeutics to medical procedures and behavioral changes. This definition is intentionally holistic with regard to directionality, stage of intervention development and modality."
Therefore, we are committed to developing innovative solutions that will improve the efficiency, quality and impact of the process for translation to improve human health. Even in the best of circumstances, the overwhelming majority of discoveries fail to translate. CTSA Program Goal 2 of NIH to engage patients and community in every phase of the translational process is mission critical to acceleration so they can inform the discovery process from concept development, planning, study design, data collection through dissemination, all the way from basic research to translation to humans to patients to practice to communities.
Costly waste of funds, resources and time can be avoided by early and continuous involvement of trained patients and community members through the Patient & Community Peer Review Academy. Our long-term goal is to offer a CCTS Patient & Community Co-Design Studio for the research community to reach out for consultations on a variety of topics with honoraria for the community experts. This level of co-design and co-production with community within team science to generate and translate new knowledge is not only a "sacred social compact" (Dr. E. Gordon Gee) as a land-grant institution, but it has the potential to transform research, policy, practice as well as health equity. If you are interested in this work and collaborating with us on the upcoming Class of 2021, please contact me at Tanya.Mathew@osumc.edu.
What lessons have you learned from the community that have helped you as a university staff member?
Subject matter expertise with years of education on theoretical concepts and book knowledge cannot replace the voice of the lived experience, disease or condition. Whenever I have emphasized this point while teaching during class, I have noticed a palpable shift in empowerment of community members who often think their knowledge is subpar and no match for academicians. This taught me that our community members need to know that we truly respect, value and honor their lived experience and that we are serious about challenging the conventional notions of expertise.
Giving a voice in strategic and procedural decision-making processes to those who are disenfranchised or jaded by prior experiences, power imbalances or structural inequalities will help to rebuild trust. The call for an active role in decisions about research funded by public money means a lot to them, too. I also learned that co-design studios are a highly effective way of facilitating equitable partnerships and power-sharing between PIs/inventors, study team, other stakeholders along with patients and community members. Similarly, for study section meetings with shared power. If we want to create a more just, equitable and inclusive research enterprise than what we had before the pandemic, we have to invest significantly and urgently to include those who have been historically excluded from all the processes of knowledge creation and decision-making, especially the most discriminated against members of our society. I have learned that participatory and co-design practices that bring together diverse perspectives to define a problem and develop solutions have the potential to transform science and team science by maximizing everyone's different skills, knowledge, experience, and abilities to accelerate innovation. And that includes staff members! As an undercover faculty member in a staff role these past 4.5 years at Ohio State, I also learned that intellectual and scholarly contributions to the knowledge enterprise by staff are often invisible which is why this Community Connector spotlight is so good.
I would be remiss if I did not mention that I have also learned a LOT from my external collaborators at the National Institute for Health Research, U.K. They have been doing this work since 1996! So I'd like to conclude with a quote from Professor Dame Sally Davies, former Chief Medical Officer of England - "No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost-effective."
What has been your favorite moment from your community-engagement work?
Only one favorite moment? How about our youngest graduate who was 18 when he stumped everyone with his insights about a pilot proposal during the study section meeting. The poignant moment when the father of a 40-year-old with cerebral palsy shared she was so excited about participating in a co-design interview to share her expertise on the use of wheelchairs for an invention because "no one had ever asked her opinion on anything." Or the unforgettable study section meeting when one of our dedicated community reviewers drove up to a Whole Foods parking lot to get better Wi-Fi so he could share his scores and recommendations. When faculty reviewers for a recent pilot RFA were so impressed by the "incredible" graduates that they said, "I hope this is adopted for all review committees moving forward because I wouldn't want to do another committee without community reviewers after this experience." Or when a grant applicant PI with a lot of experience with grant applications responded to the comments for overall "Patient and Community Real World Impact Score" with "This is the best summary paragraph I have ever seen! We really appreciate these encouraging words and valuable comments." In short, this work is so rewarding to all involved and it is hard to overstate the value and impact of the contributions by our patient and community graduates at multiple levels.
What advice do you have for other staff members who are interested in getting involved in community engagement?
It will take effort and energy to overcome preconceived notions and agendas to invest in sustained, reciprocal relationships with community members so try your best not to miss an opportunity to demonstrate that you have their best interests at heart (which is actually a requirement, if you ask me). I would encourage you to become aware of your implicit and explicit biases so you can intentionally take steps to build bridges with members of whichever group you find it difficult to relate with or understand. Instead of "othering," express genuine interest at the individual level and do your homework - Google can help you. Empathy is so key and so is common identity formation when you build these type of relationships - we are actually more alike as human beings than different. Be flexible and understanding, keeping an open mind and open heart always, especially when it comes to different cultural, ethnic, racial and religious groups.
Practice self-compassion for the mistakes you are bound to make as a human being but be quick to apologize and express your willingness to learn and grow. Be agile and ready to change course especially as soon as you realize that your assumptions were wrong, for example. It takes humility to do this work with authenticity because each person we encounter is unique and worthy. In addition to working on your emotional and cultural intelligence, work on your cross-cultural communication skills to foster inclusive excellence, bidirectional alliance and open dialogue with community members. The small and big steps you take as you represent The Ohio State University in the community will pay off and ultimately improve public trust.