Abstract
Traditionally, basic scientists have not been as engaged in the translational continuum when it comes to engagement with patients, caregivers, and other community stakeholders. In order to address this discrepancy, a multi-disciplinary team at Moffitt Cancer Center conceived of and enacted the Patient-Researcher Forum (PRF) to promote a community-engaged research approach through communication, compassion, and bi-directional research insight for both patients/caregivers and researchers. We outline the structure and implementation of the PRF, its participants, and qualitative and quantitative results across 14 sessions. PRF sessions were conducted between July 2018-October 2019 and included 29 patients/caregivers and close to 200 researcher/staff participants; post-participation survey response rates assessing the PRF experience were 27.6% (patients/caregivers) and 60.3% (researchers) on average. Research staff overwhelmingly reported that the PRF was beneficial, citing that it helped them gain new patient-centered perspectives and helped them practice communicating research to lay audiences. Patients/caregivers also reported that the PRF was valuable, indicating that they gained a better understanding of research and that they developed a personal connection with researchers. Our PRF model may provide a strategy for improving basic scientist communication, ethics, and understanding of research impacts on the populations they wish to serve. This innovative model provides a much-needed direct connection between basic scientists and patients/caregivers which creates a two-way learning platform that fosters understanding and research ideas in the spirit of community-engaged research.
Introduction
Engagement and communication between researchers, patients, and caregivers is a key aspect of translational research. When researchers understand the patient and caregiver clinical experience, they are better able to target research questions to address the key clinical needs that are most relevant to patients. This understanding has implications in different areas of research. For example, research informed by clinicians may be more easily disseminated and implemented in clinical practice [1]. Research informed by patient and family perspectives is often better accepted by participants, leading to increased study enrollment rates, [2] and can lead to improved quality of treatment and research [1].
Similarly, when patients and caregivers learn about the research process, they are better able to understand the challenges involved in developing effective treatments and may become better research advocates [3]. This bidirectional engagement between patients/caregivers and researchers fosters a more collaborative and ethical environment in the spirit of community engagement towards community-engaged research [4]. An example of this process is community based participatory research (CBPR). CBPR is an approach to research where the research process is a mutually beneficial partnership with shared power and co-learning, the goal of which is better translation of research to promote health equity [5]. While not typically used by basic science researchers, CBPR provides a useful framework when considering avenues for moving patient/caregiver integration forward.
More patient and family involvement in health care research has recently been encouraged by federal organizations in the United States. For example, the Patient-Centered Outcomes Research Institute (PCORI) was established in 2010 [6] and in 2016, the National Cancer Institute (NCI) added community outreach and engagement as a major evaluation criterion for NCI Cancer Center (CC) designation [7]. In response, many CCs have created community advisory boards, generally consisting of key external stakeholders including community members, patients, advocates, and caregivers. While an important step towards community engagement, additional strategies to include broader and more diverse groups of stakeholders to the research mission of the CC are needed [8, 9]. Only 5% of cancer survivors report actually participating in patient-centered research, despite 26% indicating that they would be interested in such activities.[10] This has important implications for population engagement, translation of research into policy implementation, and extension of research and policy both within and beyond an institution’s catchment area [7].
Researchers in population, behavioral, and social sciences have been more responsive to the call for increased community engagement, and academic disciplines like education, organizational psychology, anthropology, nursing, and public health have a long standing history of community engagement during research [11]. Population scientists frequently work with a target community or population through study recruitment, collection of questionnaires or biospecimens, or delivery of interventions. In contrast, basic scientists generally focus on biological mechanisms of disease and progression, often without the perceived need to delve beyond the confines of basic laboratory systems and models. Thus, direct connection with the populations that basic scientists might impact with their work is far less likely. Logistical challenges may be present, such as biosafety regulations, that create barriers to the physical entry and engagement of community stakeholders into the basic science research realm. However, we argue that there is a need for direct interaction between basic scientists and patients and other community stakeholders, and the absence of this interaction underscores a profound missed opportunity in cancer research. Without this connection, basic scientists may not appreciate the impact and consequences that their research can have on patients and families depending on how they design their studies. Understanding this connection could, for example, lead to considering key factors like financial cost, side effects, and quality of life in addition to biological efficacy in the development of therapeutic agents for those they wish to help.
Forging meaningful connections between patients/caregivers and basic science researchers represents an underdeveloped area and an opportune field for engagement and education between all parties. However, there are few models available to demonstrate how to bridge the divide between researchers and the community stakeholders that they serve, [12–14] let alone the specific focus of basic scientist engagement with patients and caregivers. To address this gap, researchers from basic and population science partnered with our existing Patient and Family Advisory Council to create the Moffitt Patient-Researcher Forum (PRF), a model for engagement developed specifically to bring together patients, caregivers and basic science researchers. Here, we describe our efforts in developing the PRF as a new model of patient/caregiver and research engagement that has two aims: (1) to promote education of patient/caregivers about cancer research while (2) simultaneously educating researchers about clinical management/treatment of specific cancer types as well as the cancer experiences of patients/caregivers. We discuss how the PRF is designed to provoke introspection about research motivation, to reinforce compassion, and motivate more patient-centered research efforts among researchers. We report qualitative and quantitative findings of how the PRF provided patients/caregivers with new insights and understanding of cutting-edge basic cancer research and of basic science researchers into the patient/caregiver cancer journey. We also present data indicating how this experience increased researcher/research staff motivation and connectivity with patients/caregivers. Finally, we detail the self-reported benefit to both researchers and patients/caregivers as well as areas for future improvement.
Materials and Methods
Overview of the Patient-Researcher Forum
The PRF series was originally inspired by an organic interaction between a patient and a basic science lab; during a standard presentation the patient shared her cancer story with the lab members. Afterwards, the patient reported an emotional catharsis and the lead investigator noted that an increase in motivation, work efficiency, and increased sense of purpose within the lab. In direct response to the need for meaningful connection between basic science and the community, the PRF was developed by the PRF co-chairs, senior author (EL) in partnership with the director of the Moffitt Patient and Family Executive Program (AB). The development was also done with extensive input from representatives from the Patient and Family Executive Program (AB & KKA, with input from patients and caregivers from our Patient and Family Advisory Board) and a supportive care provider (LQL) to guide the format of the PRF, the preparation process, and the criteria by which patients are selected for participation. The Patient and Family Executive Board also is involved in providing ongoing support for participants.
The initial objectives of the PRF were to: (i) give patients a first-hand view into basic research on their cancer type in both dry and wet laboratories in effort to promote an understanding of the importance of research and the amount of effort invested in increasing our understanding of treatments for their cancer type; (ii), provide each patient/caregiver with a safe environment to communicate their cancer journey to an audience of researchers/research staff; (iii) give researchers first-hand insight into cancer patient experiences that are relevant to their research and to stimulate motivation, compassion/empathy, sense of clinical/translational relevance, and to bolster a sense of purpose.
The PRF is a monthly event in which a patient and family caregiver are invited to meet with researchers from both wet and dry laboratories. Patients/caregivers first receive a 30-minute tour of a research laboratory in the CC from a basic scientist that studies that patient’s cancer type. Meanwhile, 1-2 clinicians who specialize in the patient’s cancer give a 30-minute “crash course” to researchers aimed at bringing them up to speed on the current standard of diagnosis, frontline therapeutic approaches, management of therapeutic resistance, co-morbidities, and important, currently unmet clinical needs and hurdles.
After the tour/clinician briefing, the patient/caregiver and researchers meet in a group format. Researchers briefly share their career/training journeys and motivations, then summarize 1-2 active research projects in their laboratory that are particularly relevant to the patient’s cancer (e.g., projects focusing on improving diagnostic approaches or therapeutic outcomes). The goal is to provide the patient/caregiver with insight into (1) “dry” cancer prevention and “wet” basic biology (e.g., cell biology/biochemistry) research at the CC, (2) what experiences and training go into a research career, and (3) what potential new preventative, diagnostic, or therapeutic modalities are making their way through the research pipeline. The patient/caregiver then share their cancer story with the researchers. Finally, patients/caregivers and researchers have a roundtable discussion moderated by author AB to facilitate exchange of ideas and perspectives. As this was determined to be a program evaluation project, it was IRB exempt.
Participants
Patients & caregivers:
For each monthly forum, one patient with a different cancer type is selected by PRF co-chairs and consultants based upon cancer type, stage, and treatments. Each patient is prepared according to patient- and family-centered care principles (https://www.ipfcc.org/) of treating patients with dignity and respect and creating mutually beneficial partnerships through collaboration. This includes vetting for their comfort, motivation, and where they are physically and emotionally in their treatment trajectory. An effort is made to select a diverse group of patients and highlight unique stories that may be relevant to researchers. The structure of single patient/caregiver and multiple researcher/research staff per forum was intentionally designed to facilitate the intimate emotional exchange experience between one patient and research team and was based on stakeholder feedback. Logistically, this design allows for an intimate tour and presentation of the dry and wet laboratories whose studies focus on the patient’s cancer type, in which patients can feel free to ask questions. Moreover, the showcasing of a single patient during the roundtable of multiple researchers/research staff is meant more effectively and comfortable convey the often emotional/painful experiences and messages that they have for researchers.
Patients and caregivers provide their consent prior to participation and are encouraged to only share what they feel comfortable talking about. Author AB works with each patient/caregiver to maximize their comfort and impact by streamlining the storytelling to focus on who they are as a whole person, what they have experienced (including struggles and triumphs), and how cancer has affected their life in a 20-30 minute presentation during the roundtable. They are asked to highlight specific aspects of their cancer journey that might stimulate or inspire researchers to think about how their research might help to improve diagnostics/prognostic/therapeutic modalities for the featured cancer type – for example, experiences of problematic or suboptimal diagnoses or prognoses, ineffective therapeutic approaches, and unanticipated co-morbidities. To ensure the patient’s well-being, the Patient and Family Advisory Program’s licensed oncology social worker acts as a consultant to the program. All participants are followed up with after the forum if/when deemed appropriate and may be contacted by the social worker.
Scientists & staff:
Moffitt consists of five scientific programs. The primary group targeted for the current initiative are basic scientists from three scientific programs: Cancer Biology and Evolution, Chemical Biology and Molecular Medicine, and Immunology. The remaining scientific programs represent Population Science; an invitation is extended to these members, but as these scientists have other opportunities to interact with community members, they are not the focus of the current program. Non-research staff are also invited to attend the PRF. All invitees are made aware of the patient’s type of cancer so that researchers can attend the PRFs that best match their interests. To maintain the interactive format and opportunity for open discussion, attendance is limited to 25 scientists/staff.
Procedures
Patient laboratory tours
Patients and their caregiver (if desired), are matched by author EL to both a dry and a wet laboratory, when available, that studies the patient’s cancer type. The goal is to provide the patient/caregiver with insight into “dry” cancer prevention and “wet” basic biology studies at the CC. These tours are generally led by 1-2 research trainees (graduate students or postdoctoral fellows) and/or research scientists. In addition to introducing themselves and briefly disclosing their personal backstories and educational paths into a career in cancer research, the researchers provide an overview of the laboratory research programs as well as a lay-targeted explanation of a specific research project in the laboratory.
Clinical “crash course”
After the identification and confirmation of the patient to be featured at a given PRF, EL identifies 1-2 CC clinicians who specialize in the patient’s cancer type and invites them to give a clinical crash course. During the patient/caregiver laboratory tours, basic researcher attendees from diverse disciplines around the CC convene in the forum conference room and are briefed on the clinical diagnosis/onboarding, frontline treatment, symptom management, and ongoing clinical challenges. The briefings are intended to stimulate researchers to think about how their current and future research efforts might help to address ongoing clinical problems.
Roundtable
After the laboratory tours and clinical crash course, the patient/caregiver and researchers convene for a roundtable forum designed to promote strategic communication between the two groups. Prior to the roundtable, researchers/staff are instructed in appropriate communication by the PRF co-chairs. For instance, they are reminded to not use scientific jargon when describing their work. Importantly, the attendees are instructed to be empathetic—but, out of respect for the patient/caregiver emotional state and in accordance with PFAC feedback—specifically not to offer words of advice or encouragement (e.g., “Stay strong,” “Don’t give up,” “Hang in there,” etc.).
Once the patient/caregiver joins the researchers in the conference room, the roundtable begins with the researchers individually introducing themselves, briefly describing their position/role, research focus, how their research project(s) are relevant to/benefit the cancer patient experience, and importantly, what their personal connection to cancer is. We have found that this latter disclosure is important, as it communicates to the patient/caregiver that the researchers are willing to be emotionally vulnerable and that the forum is a safe and comfortable space for the patient/caregiver to share their experience. Next, the patients/caregivers share their story and cancer experience. As mentioned above, they are coached to highlight specific issues with their cancer journey that might be helped by research efforts. Afterwards, the forum opens for a short question and answer session.
Post Participation Surveys
Post participation surveys were purpose-driven and focused on program evaluation and assessment of PRF experience. They were developed by a team with expertise in basic science, health education, program evaluation, and patient advocacy. Surveys were distributed to both patients/caregivers and researchers after the roundtable. Surveys are taken online and either accessed via QR code (displayed at the end of each forum) or via email (by request). All surveys ask for patient/caregiver cancer/treatment status and researcher job title.
For patients/caregivers, 1 item assesses interest in research prior to the PRF, 1 item assesses how prepared they felt to share their story, and 1 item assesses how comfortable or anxious they felt during the PRF. Seven other questions ask participants to report on various aspects of their experience, including their connection to the researchers, insight gained into the research process, self-confidence, and emotional benefit of sharing their story.
The survey for researchers/staff includes 6-items regarding prior experience with patients and lay audiences; 5-items assessing if the PRF changed their perspective; and 7-items assessing if the PRF stimulated new scientific ideas and if the PRF reinforced their cancer research experience. Two other items assess if the PRF was relevant to their research focus and if the PRF helped them practice communication to lay audiences.
Respondents are asked to provide their answers on a scale of 1 (strongly disagree) to 5 (strongly agree). All respondents are asked 2 open-ended questions aimed at ways to improve the PRF and what they found helpful/beneficial about the forum.
Results
A total of 198 researcher/staff participants and 29 patients/caregivers attended 14 forums conducted from July 2018 to October 2019. A total of 8 patients/caregivers and 72 researchers/staff provided survey feedback. Because some researchers attended multiple forums, survey responses total 107 (8 responses were removed because there was ≥50% missing data). As shown in Table 1, patient/caregiver participants represent a spectrum of active treatment and survivorship, whereas most researcher/staff participants were postdoctoral fellows (29.2%) and graduate students (25%) (Table 1). The patient/caregiver response rate was 27.6%, while the researcher response rate fluctuated from 30.8%-94.7% over 13 sessions (which does not include session 8 due to a technological malfunction with the survey) (Table 2).
Table 1.
Researcher-Patient Forum participant characteristics
| Patient and caregiver descriptions (N = 8) | n | % | |
|---|---|---|---|
| I am an active patient/on therapy | 3 | 38 | |
| I am a patient/survivor and I have finished my therapy | 2 | 25 | |
| I am a caregiver and have never had cancer or been on therapy | 2 | 25 | |
| I am a caregiver and have cancer and am on therapy | 1 | 13 | |
| Researcher positions (N = 72) | |||
| Graduate student | 18 | 25 | |
| Medical student | 1 | 1 | |
| Postdoctoral fellow | 21 | 29 | |
| Research associate | 12 | 17 | |
| Research/clinical faculty | 6 | 8 | |
| Other* | 14 | 19 | |
research coordinator, medical science writer, grant administrator, research financial analyst, research specialist, research scientist, research assistant, foundation, strategic marketing
Table 2.
Session topic, researcher number in attendance, and questionnaire rate
| Session Topic and Lab Focus | Host Programa | Attendance n |
Response Rate n(%) |
|---|---|---|---|
| 1. Acute Myeloid Leukemia | CBMM | 12 | 10 (83) |
| 2. Multiple Myeloma | CBMM | 8 | 4 (50) |
| 3. Metastatic Breast Cancer | IMM | 12 | 8(67) |
| 4. Non-Hodgkin’s Lymphoma | CBMM & IMM | 8 | 4 (50) |
| 5. Melanoma | CBMM & IMM | 18 | 11 (61) |
| 6. Lung Cancer | IMM&CBE | 20 | 7(35) |
| 7. Sarcoma | IMM | 13 | 4(31) |
| 8. Pancreatic Cancer | CBE | 12 | missing |
| 9. Prostate Cancer | CBMM&CBE | 14 | 8(57) |
| 10. Mantle Cell Lymphoma | CBE | 8 | 8 (100) |
| 11. Endometrial Cancer | CBE | 19 | 18 (95) |
| 12. Male Breast Cancer | CE | 21 | 13 (62) |
| 13. Ovarian Cancer | CBMM, CE, IMM | 20 | 11 (55) |
| 14. Bladder Cancer | CBMM, CE | 13 | 5 (39) |
CBMM: Chemical Biology and Molecular Medicine; IMM: Immunology; CBE: Cancer Biology and Evolution; CE: Cancer Epidemiology
Patients/caregivers reported that they had a more positive outlook on the future of cancer research (M = 4.6, SD = 0.52) after participating in the PRF. All patients/caregivers also reported that they felt adequately prepared to share their story and cancer experience at the forum (M = 4.6, SD = 0.52), that sharing their experience was comfortable (M = 4.8, SD = 0.71), and that they gained new insight into the processes, importance, and need for cancer research (M = 4.8, SD = 0.46) (Table 3). In open-ended responses, patient/caregiver participants provided positive feedback regarding what was helpful and beneficial about the forum. They indicated that they enjoyed asking questions of the researchers and as a result of the PRF experience, they gained a better understanding of the scale and processes of research and felt that they had developed a personal connection with the researchers (Table 4). Patients/caregivers described the PRF as “relaxing,” “comfortable,” and that they felt “confident” during their talk because the researchers were “interested in what [they] had to say”.
Table 3.
Patient/caregiver and researcher/staff evaluations of the PRF on a scale of 1 (strongly disagree) to 5 (strongly agree)
| Patient/caregiver evaluations (n=8) | Mean | SD |
|---|---|---|
| Made me question my decision to work in cancer research | 1.8 | 1.12 |
| Made me think about pursuing other lines of work other than cancer research | 1.9 | 1.24 |
| Stimulated new scientific ideas for my own research | 3.5 | 0.91 |
| Stimulated new ideas for potential collaborations with other researchers at the forum | 3.7 | 1.11 |
| The patient/caregiver experience shared in the forum is relevant to my research focus | 4.0 | 1.03 |
| I formed a connection with the patient/caregiver | 4.2 | 0.80 |
| Sharing my research in this forum helped me to practice communicating to lay audiences | 4.3 | 0.93 |
| My research efforts are more important/relevant than before | 4.4 | 0.79 |
| The patient/caregiver benefited from this forum | 4.4 | 0.63 |
| I have gained new clinical perspective/insight | 4.6 | 0.62 |
| Reinforced my decision to work in cancer research | 4.6 | 0.67 |
| Increased my motivation for cancer research | 4.6 | 0.57 |
| I have gained new patient-centered perspective/insight | 4.8 | 0.48 |
| Researcher/staff evaluations (n=107) | ||
| Sharing my story and cancer experience with researchers caused me anxiety | 2.4 | 1.06 |
| I have greater self-confidence | 3.6 | 1.30 |
| I have positively impacted cancer research | 4.1 | 0.64 |
| I have benefited emotionally by sharing my story with researchers | 4.5 | 0.76 |
| I have greater confidence in the impact cancer research | 4.5 | 0.54 |
| I developed a greater connection with cancer researchers | 4.5 | 0.76 |
| I was interested in meeting cancer researchers and learning about current cancer research | 4.5 | 0.76 |
| I have a more positive outlook on the future of cancer research | 4.6 | 0.52 |
| I felt adequately prepared to share my story and cancer experience at this forum | 4.6 | 0.52 |
| Sharing my story and cancer experience with researchers was a comfortable experience | 4.8 | 0.71 |
| I gained new insight into the process, importance, and need for cancer research | 4.8 | 0.46 |
Table 4.
Patient/caregiver open-ended responses about the PRF
| What do you feel was most helpful/beneficial about this forum? |
|---|
| “I always knew Moffitt was working on research, but I didn’t realize to what scale. It was quite surprising to see how significant the size of the research center is and cancers being worked on. I was so impressed with the therapies which are being researched simultaneously.” |
| “The tour and discussions in the myeloma labs, the relaxing and comfortable format used for giving the presentation, all the attendees taking a few minutes to tell us about their work at Moffitt.” |
| “Being able to tour the research labs and ask questions of the researcher. The researcher was optimistic about multiple myeloma research and this made me very optimistic also. Giving my talk to an audience that really was interested in what 1 had to say. This made me feel more confident and was able to talk better than 1 hoped to.” |
| “I found the challenges researchers face to be most educational.” |
| “To have a personal connection with the researchers. 1 like the open forum with the back and forth responses.” |
| I enjoyed my time going through the lab, receiving information on what the newest treatment is. Matt was so knowledgeable. The employees that were in the forum were just so nice and eager to hear what 1 went through. It was also beneficial to myself. 1 enjoyed the experience.” |
| “Seeing and hearing actual researchers who investigate the origin, prevention, and treatment of cancer was both eye-opening and uplifting. Thank you for this opportunity!” |
Researchers/staff also rated the forum highly overall, indicating that the PRF reinforced their decision to work in cancer research (M = 4.6, SD = 0.73), helped them gain a new patient-centered perspective (M = 4.7, SD = 0.46), and helped them practice communicating their research to lay audiences (M = 4.3, SD = 0.88) (Table 3). Open-ended feedback from researchers about what they found helpful and/or beneficial was overwhelmingly positive, indicating that they appreciated the connection they made with patients/caregivers and even with other researchers (Table 5). Numerous researchers responded that the PRF helped remind them why they do the work that they do. For example, one researcher wrote that:
I thought it was going to be sad but it was the opposite. Hearing how [the patient] faced so many issues and was still positive was inspiring. I experienced a positive change in my attitude. I’m more motivated. Before it was a job. Now, I know the patients need me and my life has a purpose. I feel appreciated by patients…
Table 5.
Researcher/staff open-ended feedback about the PRF
| What do you feel was most helpful/beneficial about this forum? |
|---|
| “Listening to the patient’s experience/challenges and how we (Moffitt) have contributed to their life story. It’s a double-sided coin, educational for the patient and empowering for staff.” |
| “I think every aspect of the forum is critical to its overall impact. From a scientific perspective, discussions with the clinical oncologist were highly informative. From an outreach perspective, discussion with the patients/caregivers was immensely valuable-it reinforced the need for cutting-edge research and the mission/goals of Moffitt.” |
| “For me as a Grant Administrator, it is easy to get caught up in the details and forget the bigger picture which is helping to find a cure for cancer. Because 1 am not a researcher, 1 sometimes feel as if 1 do not contribute very much to patients or Moffitt’s mission. Hearing this patient’s story really touched me and 1 felt a deep connection with this patient. 1 know health is something many do not discuss but seeing her speak about it so openly made me ask myself “how else can 1 contribute? Am 1 doing everything 1 can?” This forum helped me take a step back, reflect and see just where 1 can contribute more.” |
| “This type of initiative helps ensure that research continues to be patient/caregiver focused. Also, it showcased the vital role that patients (and caregivers) play in contributing to improvements in clinical practice, treatment and research.” |
| “Patient ended today’s session saying, “It’s not diagnosis but it’s treatment which is more painfull”, which conveyed that we need to work more than what we are doing in order to improve patient’s life/overall outcome. This is my take home message!” |
| “Getting to meet an actual patient puts a face to the work we do every day and helps motivate me more and humanizes the work I’m doing.” |
| “The most beneficial aspect of this forum is gaining insight from a patient’s perspective. Before my research experience at Moffitt, there was a strong dichotomy between the lab and clinic. However, with forums like this, this helps unite and fortify the relationship between the researcher and patient. Sometimes as researchers we become disgruntled when an assay fails or something goes awry in the lab. Despite these roadblocks, opportunities like this remind us as researchers that our work is indeed crucial to ameliorating the lives of current and prospective patients.” |
Since the PRF is open to all researchers across the CC, a variety of research topics are presented, with one researcher noting that they thought it “was very nice to meet the other researchers/postdocs and listen to what they do in simple terms”. Another researcher stated that the PRF was beneficial for patients stating that:
For the patient, I think it serves as an outlet that they can tell their story without being disregarded - just HEARD. I believe it gives them hope to actually see what goes on in the labs and to know that there is also actual research going on every day to help them with this disease - that they know we CARE.
Discussion
This paper describes an innovative model for engagement between basic science researchers, patients, and caregivers that is responsive to calls for community-engaged research across the translational spectrum. Although frameworks for community-engaged research are most likely to be found in the social sciences rather than the basic sciences, the PRF at Moffitt Cancer Center provides a strong foundation for pioneering future work and integration of the community engaged mindset into basic science research.
One specific benefit of the PRF identified by researchers was the opportunity to practice communicating their science to lay audiences. Ideally, researchers should be able to communicate their work to colleagues in other disciplines, trainees, participants, media, and community members. While academic environments and venues such as conferences, laboratory meetings, journal clubs, and seminars provide ample opportunities to hone scientific communication skills, basic researchers have fewer opportunities to develop skills for communication with lay audiences. Communication workshops for scientists exist, [15, 16] however, these experiences are not widely available and many basic scientists do not receive extensive training or opportunities to practice these communication skills. The PRF provides another format to further enhance and engage researcher communication. Considering patients/caregivers strongly agreed that they “gained new insight into the process, importance, and need for cancer research” and that they have a “more positive outlook on the future of cancer research”, the PRF appears to be a viable avenue for basic cancer researchers to practice effective communication and dissemination of information to lay audiences. Previous research has found that T1-T2 researchers felt that explaining research in lay language to stakeholders could help improve their communication to funders and donors, [17] and the PRF certainly supports the notion that researcher communication was impacted positively. This may be particularly important as the majority of scientist attendees were trainees, who are gaining important skills to carry forward into later professional situations to share with their own trainees.
Further, the PRF model supports the ethical and empowerment pillars that are key to CBPR [18]. As is, the PRF is not an example of CBPR but CBPR provides a model of community engagement that will be used moving forward. Ethical principles guiding research demand that scientists allow for informed consent, maximize benefits and minimize risks, and do not exploit populations [19]. Although basic science research does not often involve human subjects, these principles are still important to consider given that their findings are ultimately intended to be translated into prevention, early detection, and treatment strategies for the community. Developing a structured format to engage researchers with community members through the PRF builds towards these ethical principles and allows for the development of shared priorities and solutions. Our findings indicate that by facilitating communication between these groups, both basic scientists and patients/caregivers report developing a greater understanding of the other’s experiences and commitment to cancer research. This opportunity allows community stakeholders to feel invested as an active contributor to research that might directly impact their cancer care. By providing a safe environment for the patients/caregivers to share often painful details of their cancer journeys with basic scientists, the PRF forges emotional connections between researcher and patient/caregiver, strongly reinforcing compassionate motivations in the basic researchers while providing a new sense of support for the patients/caregivers. Open-ended feedback also suggests that the PRF fosters an environment that promotes new connections between researchers. Connecting researchers from across a diverse research environment will help to unify the CC and reinforce that its mission is not simply “patient- and family-centered care” but that, in fact, its basic scientists play a crucial role in “patient- and family-centered research”.
One area for growth with the current PRF format is the ability for patients and caregivers to more directly guide the scientific work, similar to community-engaged research navigation program described by Kost et al. [14]. Under this robust model, an iterative, interdisciplinary process builds partnerships between investigators and community stakeholders throughout the entire research process, from aligning research aims to analyzing and disseminating results, This provides structure for developing new concepts or enhancing a study with the input of target populations [14]. In our sessions, researchers reported that the PRF did not substantially impact the stimulation of “new scientific ideas for [their] own research” or “new ideas for potential collaborations with other researchers at the forum”. Not only did researchers identify this as a deficit, but one patient also suggested a way to improve the PRF was to have “more, ongoing interactions with the researchers themselves”, indicating patient interest in the research process. In its current format, there are a few factors that might limit how the PRF can address these suggestions. First, research/staff attendees are invited from across the entire CC. While an effort is made to include researchers who focus on the featured patient’s cancer type, all researchers are welcome, which can potentially detract from collaborations that might otherwise form among more homogenous cancer-type researchers. Further, many attendees are trainees who may not currently have independent programs of research; this may be due to more flexibility in the trainee schedule. Addressing potential barriers to engaging more independent research faculty would enhance the ability to implement community perspectives into ongoing research at the CC. Second, the roundtable is largely spent discussing the patient/caregiver experience, whereas research discussions are largely limited to the individual laboratory tours (which are not open to all research attendees). These observations can help inform future iterations of the PRF to bolster efforts that stimulate new scientific ideas and collaborations among researchers. For example, the roundtable could instead be modified to include time for brainstorming research ideas and collaborations between researchers with input from the patient/caregiver. Another modification that would likely help trainees to improve their lay communication is to include training sessions to help reduce jargon and time for patient feedback on their communication. In addition, attendee invitations could be prioritized for researchers who focus on the featured patient’s cancer type. These modifications may further empower patients/caregivers and promote research that follows the values and needs of the CCs community stakeholders. Since researchers across the translational continuum attend the PRF, intra- and interdisciplinary collaboration, along with patient/caregiver input, could benefit a wide variety of research projects.
Beyond the potential for the PRF as a platform to facilitate community-engaged research in basic science, it represents an important venue for both researchers and community members to emotionally recharge. Faculty in academic medicine frequently report high levels of burnout based on increasing demands for productivity and fewer resources, which can significantly undermine performance, commitment, and well-being [20, 21]. One key protective factor against burnout for faculty members and trainees is finding meaning in their work, [22, 23] and including community stakeholders in research discussions has been suggested to increase basic scientist’s motivation for research [17]. We found that researchers who participated in the PRF reported positive feedback about their (re)commitment to their work and motivation to continue. Several researchers stated that putting a face to the research helps to humanize their work and provided renewed enthusiasm.
Similarly, the PRF can be helpful for patients and caregivers. Participants reported low levels of anxiety and high levels of comfort in sharing their stories and reported gaining important knowledge and insight. Although not all patients and caregivers feel comfortable sharing their story publicly, extensive research indicates that the cognitive and emotional processing involved in sharing stories about stressful experiences can improve adjustment and psychological and physical well-being in cancer patients [24, 25]. This is particularly true when met with facilitative and supportive responses, [26, 27] which was reported by patient/caregiver participants. Further, patients/caregivers who participated in the PRF indicated they felt that they positively impacted cancer research. Research indicates there is a strong desire for cancer patients to reciprocate the support they received during care [28]. Participating in the PRF and sharing their story represents a safe and supportive venue for this purpose.
Although the PRF benefited patients/caregivers, we have outlined ways to improve the current model. In addition to what was already highlighted, another major constraint is the current scale of the project such that only one patient (and/or caregiver) participates at a time. This was highlighted in patient/caregiver feedback as an area for improvement and is an area of priority for the investigators. Future iterations of the PRF might be expanded to include more opportunities for patient participation. Further, the primary focus of the PRF is the patient, which aligns with research on PCORI pilot projects which found that patients are often the primary stakeholder [3]. However, other key stakeholders from the wider community might have important input, as well [29]. Finally, the PRF sessions in their current form are aimed primarily to provide a general overview of the patient experience and the workings of scientific labs; in the future, mechanisms will evolve to better integrate patients and caregivers throughout the scientific process on research projects. A systematic review of stakeholder engagement in patient-centered outcomes research previously reported that stakeholders were more engaged at earlier stages of research, [30] creating a missed opportunity to integrate patient input in the implementation and dissemination of research findings.
Limitations
Although the PRF exhibits many exciting benefits, some limitations should be considered. First, the survey response rate of patient/caregiver attendees was quite low, with only 27.6% providing feedback. Methods of survey distribution could be altered in the future in order to enhance survey participation. Additionally, while 14 sessions were held, survey data was only reported on 13 sessions due to a technological malfunction. Second, there are limitations due to the cross-sectional nature of our data. Longitudinal follow-up will be beneficial for assessing impacts of the PRF overtime, such as changes in research due to the PRF experience or rates of burnout. Finally, this forum represents the experience of a single CC and may need to be adapted to other contexts and populations of other CCs.
Conclusion
The PRF model is an outreach and engagement model that might be considered for implementation as CCs nationwide move to better engage patients and community members to facilitate true patient- and family-centered research across the bench-to-bedside spectrum. This framework, which integrates basic scientists with the community engagement approach, provides a novel program for community outreach and engagement that can only serve to improve cancer research programs, projects, and outcomes. The PRF is feasible to implement on a monthly basis and benefits both the researchers and patient/caregiver. The adoption of PRF-like mechanisms by other cancer, clinical, and research centers may facilitate meaningful communication between patients, caregivers, and basic scientists and move critical research forward that is more mindful of power relations, collaboration, compassion, and ethical outcomes of research.
Brief Commentary.
Background:
Basic scientists and patients/caregivers rarely have a chance to interact. Fostering contact between basic scientists and patient/caregivers presents an opportunity to improve research collaboration along the translational research spectrum, resulting in improved research questions, aims, and outcomes. We describe an innovative model for translational research engagement that includes basic scientists, patients, and caregivers.
Translational Significance:
This model can be modified and implemented by other cancer centers and was found to improve researcher communication and motivation for research. This type of engagement can lead to true patient- and family-centered research that spans the bench-to-bedside spectrum.
Acknowledgements
We are incredibly grateful to all the patients, family members, clinicians, researchers, faculty, and institutional administrators who provided their time, support, assistance, feedback, and experiences with us during the PRFs. Special thanks to the Moffitt Research Executive Committee for their insight and support, and particularly to Jim Mule for his financial support of the PRF series. This work was also supported in part by the Participant Research, Interventions, and Measurement Core at the H. Lee Moffitt Cancer Center & Research Institute, a comprehensive cancer center designated by the National Cancer Institute and funded in part by Moffitt’s Cancer Center Support Grant (P30-CA076292); T32-CA090314 (PIs: Vadaparampil and Thomas H. Brandon); and internal funding. The authors declare no potential conflicts of interest and all authors have read the journal’s policy on disclosure of potential conflicts of interest. All authors have read the journal’s authorship agreement and the manuscript has been reviewed by and approved by all named authors.
Abbreviations:
- PRF
Patient-Researcher Forum
- CBPR
Community based participatory research
- PCORI
Patient-Centered Outcomes Research Institute
- NCI
National Cancer Institute
- CC
Cancer center
Footnotes
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