Public and Patient Involvement in Basic Scientific Research Patient and public involvement (PPI) in biomedical sciences is the belief that people who

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1 Public and Patient Involvement in Basic Scientific Research Patient and public involvement (PPI) in biomedical sciences is the belief that people who are affected by medical decisions, specifically patients, should have a say in how health care is provided and how medical research is conducted (Staley, 2009). The overall goal of PPI aims to improve health care systems at every level on the research continuum. On top of this, the positive interactions initiated by PPI offer mutual benefits for patients, public, medical researchers, and health care providers (PPI Toolkit, 2011). However, most common PPI occurs in clinical studies and translational research settings, rather than in basic science laboratories (Dobbs, 2011). This paper will demonstrate that public engagement in basic scientific research has a mutual benefits for researchers and the public that are comparable to the benefits commonly seen in PPI in translational and clinical studies. This claim is strongly exemplified by the collaboration between Cornell researchers and the Cancer Resource Center of the Finger Lakes in Ithaca, NY. Patient and public involvement in clinical and translational research has grown over the past few years. This movement for increased public engagement was initiated by programs such as one by the National Institute of Health (NIH) that incorporated the public in scientific advisory and grant review processes (Leshner, 2003). Other examples of patient and public involvement in clinical and translational research include writing research/grant proposals, holding public awareness campaigns, conducting research interviews, and designing surveys for social science research. Studies on this public engagement, such as the 2009 INVOLVE report written by Kristina Staley, describe the mutual benefits that arise for the public and researchers from PPI (Staley, 2009). Patient and public involvement in research can have positive influences on the research project because the patients can help by identifying relevant research questions, recognizing the big medical picture, motivating the progression of the project, recruiting participants, and developing realistic methods of collecting data (Staley, 2009). Benefits for the patients include increased awareness of the research process, gaining technical skills, finding a new support group, and increased self-esteem (Staley, 2009). Additional motivations for patients to participate in scientific research include civic engagement, kindheartedness, reciprocity, and self-reconfiguration (Thompson et al, 2013). Many patients have found PPI to be a rewarding experience to give back to their communities, improve the overall quality of health systems, and repay the medical community for the positive health care that they received throughout their treatment. The idea of reconstruction of self and identity is specifically seen in the involvement of cancer patients in PPI (Thompson et al, 2013). Many patients involved in PPI have reported that learning more about the research process has given their lives meaning and has allowed them to come more in terms with the idea of living and coping with a chronic illness. For many cancer patients, the diagnosis of cancer led to a loss of their career, professional lives, and structure in their day-to-day life, but PPI offers a positive way to fill this gap (Thompson et al, 2013). PPI allows patients to rebuild their lives and reconfigure their identities to be focused on their positive community rather than their diagnosis. Benefits for the researchers include gaining a more holistic view of a medical issue, better understanding of specific communities, and acquiring new perspectives to better view and interpret results (Staley,

2 2009). For more examples of PPI, the impacts it has, and the overall implications, see Staley The growing interest in PPI is concentrated primarily around clinical trials and translational research; however, because basic sciences tend to be relatively isolated from patient interactions, patient and public engagement in these sectors is just as important. This feeling of separation and distance from patient interactions is described by Lu Ling, Cornell Graduate Student doing cancer research in the Fischbach Lab, [Compared to in a clinical setting], we are more isolated. The people who research cancer never get to interact directly with the disease. It is more about the biological problem for people here. Related to this is the term culture of disengagement which describes this gap between a graduate student s understanding scientific knowledge and comprehension of the related social context due to this isolation from patient interactions. Bob Riter, director of CRCFL and cancer survivor, describes this problem in an editorial by saying, These basic scientists are generally more familiar with test tubes than with cancer patients I recently attended a national conference for cancer researchers. Some of the younger scientists (generally in their mid-to-late 20s) had never even met a cancer patient before (Riter, 2017). Current graduate programs educate students in the biology, chemistry, and medicine behind cancer but tend to ignore the social and human dimensions of the disease (DelNero and McGregor). This disconnect has consequences for the research process including inability to reflect on social implications of research and inability to view a problem from multiple perspectives. The partnership between Cornell researchers and the Cancer Resource Center of the Finger Lakes is an example of a program that is attempting to combat this culture of disengagement that is present in graduate student training through initiating collaboration between cancer patients and Cornell cancer researchers. The collaboration is one of the newer programs offered by Cancer Resource Center of the Finger Lakes (CRCFL), a local organization dedicated to supporting those affected by cancer. The CRCFL website describes the program as, An innovative program that connections clients of the Cancer Resource Center and doctoral students and post-doctoral fellows engaged in cancer research at Cornell University. Cornell graduate students, Peter DelNero and Alexandra McGregor, and Cornell professor, Dr. Robert Weiss, initiated this program in 2012 when they first connected with Bob Riter, director of CRCFL (DelNero and McGregor). Currently, the program, which is supported by an Engaged Cornell Grant, consists of weekly seminar sessions open to Cornell graduate researchers and cancer patients, as well as a weekend workshop with a similar focus. In these sessions, students present their research in lay language and patients share their personal experiences dealing with cancer (O'Toole, 2014). Seminar topics this semester have included cancer genetics, the effect of nutrition on cancer, political engagement, and end of life care. Presentations allow students to practice communicating scientific results to members of the general public while educating the patients about the science behind their disease (O'Toole, 2014). Patient questions and feedback give students an understanding on the social implications of their research and allow them to view cancer as more than just a scientific problem. Riter described his view of the collaboration as, People with cancer want scientists involved in cancer research to understand that they are more than just cells or molecular pathways, they are people first (Scopes, 2014).

3 Over the past four years, this partnership has had enormous impacts for the researchers and the patients. As one of the first partnerships in the country between graduate researchers and community patients, analysis into this collaboration offers insight into PPI in basic scientific research. Impacts on researchers have been documented to include a change in attitudes toward the research process, improvement in experimental methods, increased confidence in communicating to a non-scientific audience, and a broader understanding of cancer and how it affects people s lives (DelNero and McGregor). Qualitative responses from participants in the partnership demonstrate the learning outcomes of the initiative. For example, a cancer research explains her experience by stating; I used to care about accomplishments and great publications, but now, I simply want to generate data that will be most reliable and important for the improvement of cancer therapy. Another student explains how the program has allowed her to see the bigger picture of cancer by saying, As scientists, we are working on very intricate pieces of the puzzle. It is easy to lose sight of the big picture. The opportunity to really see the impact and the anxieties and the challenges that cancer patients face with treatments and the related side effects is powerful motivation (Scopes, 2014). Peter DelNero, a graduate student in involved in the initiation of the program, describes how the partnership affected his views of cancer in the following quote. I think my attitude changed mostly because when I started doing cancer research I was thinking of it only as a biological problem and I spent most of my time working with microscopes and petri dishes in the lab. But when I started doing the partnership with the Cancer Research Center of the Finger Lakes, my attitude toward cancer really changed. I started to see more of the human side of cancer and how it affects individuals and families. Darshil, a graduate researcher in the Weiss lab, stated that his participation with the Cancer Resource Center helped him Put a face to cancer. Additionally in the following quote, Dr. Robert Weiss explains how the partnership has already begun to affect his lab s research. This partnership with the cancer resource center definitely has changed my viewpoints, in terms of having a much better understanding of what patients experience if they have cancer. Studying in the lab is very different than interacting with an actual person. That s had a very big impact on how we think about our research in my lab. Now, we think more about side effects of therapies and potential toxicities. If you re just thinking about killing cancer cells, then you only worry about that. But if you think about killing the cancer cells in a patient who is going to suffer from the side effects of your therapy, then you factor the toxicity into your thinking. Some of our new research is geared that way. We are looking into replacing toxic chemotherapies with other strategies that are non-toxic. The collaboration also had positive impacts for the patients involved including a better understanding of the scientific basis of their disease and increased awareness of the scientific research process. One cancer patient describes their reaction to the partnership as, Each month, I am continually fascinated and impressed. I feel I am much more knowledgeable about how the disease progresses and why, and the exciting breakthrough research being done right here in Ithaca. Another cancer patient describes how the partnership influenced them by saying, The only question I am likely to ask in my

4 oncologist s office is when are where my next appointment is, but I am not uninterested in either my care or cancer. These scientists have given me a regular, understandable dose of hard information (Stein, 2014). Overall, it is clear that the collaboration has extensive benefits and has promoted mutual learning between two very different cancer communities. In clinical and translational research, patients are more able to directly participate in the research, taking a key role in project design, implementation, and oftentimes can take a hands-on role in the experimentation, as documented in the INVOLVE report (Staley, 2009). This direct participation is not as feasible in more basic scientific research because it includes highly specific technical skills such as cell culture and extensive data analysis. However, this does not mean that PPI, in basic scientific research, should be overlooked. As documented in the case of the partnership between Cornell graduate researchers and cancer patients, any direct connection between the two groups can have widespread benefits and promote similar outcomes to those arise from PPI in clinical and translational research, as outlined earlier. Additionally, Cornell professor Robert Weiss, founder of the partnership, stated that the program would hopefully expand in the next few years to incorporate community members into Cornell labs weekly lab meetings. This increased involvement could have many positive effects on the development of research projects; in translational/clinical research it has been documented that the patients help focus the project by coming up with relevant research questions, and can help readjust the research focus to better meet the needs of patients suffering from the disease. It is evident that this partnership exemplifies a successful outcome of PPI in basic scientific research. Currently, there are no other programs in the country similar to the one here in Ithaca (Gazave, 2017). An increase in awareness of PPI in basic scientific research is necessary because this basic scientific research forms the foundations for scientific discovery (Dobbs, 2011). Cornell PhD student, Nora Springer, describes the importance of this awareness and her hopes of spreading the program beyond the Ithaca community by stating, I hope this program inspires similar programs at research universities and hospitals. Also, I hope universities and researchers will start recognizing the importance of community outreach (Stein, 2014). Improvements in research at this level through PPI translate directly into clinical and healthcare advances that can influence the lives of the patients who help initiate the change. The sustained interactions between Cornell researchers and Ithaca cancer researchers have created a lasting relationship between the two groups through an environment of mutual learning and understanding. Sources Cancer scientists talk life and shop with cancer patients. (2014) Scopes Magazine. Cornell University College of Veterinary Medicine DelNero, P., McGregor, A. Patient Researcher Partnership. A Dialogue Project of the Cancer Resource Center of the Finger Lakes.

5 Dobbs, T. (2011). Patient and public involvement in basic science research are we doing enough? Retrieved May 01, 2017, from Gazave, E. (2017). Candid conversation: Cancer patients and survivors connect with Cornell students. Retrieved May 06, 2017, from Leshner, A. I. (2003). Public Engagement with Science. Science,299(5609), doi: /science O'Toole, B. (2014)Cornell cancer researchers listen to patients' stories Cornell Chronicle. Retrieved March 18, 2017, from Riter, B. (2017). Connecting cancer scientists with patients. Retrieved May 06, 2017, from Staley, K. (2009). Exploring Impact: Public involvement in NHS, public health and social care research. INVOLVE. Stein, J. (2014). Cancer Resource Center of the Finger Lakes Collaborates with Cornell University. Retrieved May 06, 2017, from Thompson, J., Bissell, P., Cooper, C. L., Armitage, C. J., & Barber, R. (2013). Exploring the Impact of Patient and Public Involvement in a Cancer Research Setting. Qualitative Health Research,24(1), doi: / What is Patient and Public Involvement? (2011). Patient and Public Involvement Toolkit, doi: / ch2