Flexible model for patient engagement: Achieving quality outcomes and building a research agenda for head and neck cancer

Abstract

Background This article describes the benefits of patient‐driven research in the field of head and neck oncology, reviews lessons learned from establishing partnerships with patients and caregivers, and serves as a model for further patient‐driven research endeavors. Methods Head and neck cancer survivors underwent training including that of effective communication and the basics of research methodology. They then drove the agendas for monthly meetings that included a multidisciplinary team of providers, facilitated by a physician champion (S.S.C.). Results The advisors reported concrete areas for improvement of the clinical flow, including the formation of a dental oncology clinic and a post‐treatment survivorship clinic. They also refined research topics of interest, such as treatment regret. The advisors have also driven efforts to increase public awareness and have participated in cancer symposiums and local presentations. Conclusion Patient‐driven research improves the relevance and implementation of head and neck oncology research and clinical processes.

Partnering with frail or seriously ill patients in research: a systematic review

“…The barriers and facilitators to partnering with frail and/ or seriously ill patients (e.g., funding, infrastructure, role clarity, capacity building for both patients and researchers, structural inclusivity, trust and willingness to collaborate) are similar to those reported in other systematic and scoping reviews of patient engagement [2,12,22,28,[75][76][77]. When engaging frail and/or seriously ill patients as partners across the research cycle, the degree of illness and/or frailty, and potential instability in patients' health warrants more concern for [7, 45, 47, 51, 53-55, 62, 63, 69, 70] 11 (37%) Emotional/peer support [7, 51, 53, 55, 57, 62-64, 66, 69, 70] 5 (17%) Emotional vulnerability or emotional distress [7,47,55,71,72] 10 (33%) Incorporation of patients' priorities for research and outcomes [7,24,50,51,54,56,57,61,65,67] 8 (27%) Develop new knowledge and skills [45,51,55,59,60,62,63,71] 5 (17%) Physical/cognitive fatigue [7,47,53,55,72] 3 (10%) Acquire insights into disease and treatment [51,55,69] Researcher -Perceived Impacts…”

“…Positive Impacts Negative Impacts 13 (43%) Improves/informs research design, execution, and translation [7, 51, 54-56, 59, 62-64, 69-72] 13 (43%) Research tools (e.g., consent and data collection form), processes (e.g., recruitment and retention), and methods are more relevant [7, 45-47, 51, 56, 57, 59, 62-64, 70, 71] 11 (37%) Outcomes are identified as being more relevant to patients [46,50,51,54,63,64,66,[69][70][71][72] 11 (33%) Patients' input offers directions for researchers and research funding agenciesgeneration of new ideas [24,45,48,49,51,52,57,61,65,67,68] 9 (30%) Research outputs are more accessible to the public [24,45,47,51,52,56,57,64,69] 6 (20%) Research priorities ranked by patients reflect applicability to the lived experience of illness, frailty, and/or treatment [24,48,49,52,58,61] 2 (7%) Democratization of allocation of research resources [49,52] 1 (3%) Increased transparency and accountability for publicly-funded research [55] wellbeing, but it should not serve to prevent initial or ongoing engagement…”

“…The number of patients in the studies ranged from one [64] to 168 [68] with a median of 16 patients. There were 11 (37%) studies where patients were engaged as a group with caregivers and/or other stakeholders (e.g., ex-patients, survivors, patient representatives/ advocates, or members of the public) [7,24,46,52,53,[57][58][59][60][61]72].…”

“…Other studies included patients/persons with dementia (n = 6), older adults with frailty (n = 3), and palliative patients including malignant and non-malignant disease (n = 3). Patient characteristics of frailty and/or serious illness were [46,53,54,57,63]; three (3/ 5) of which reported ethnicity more broadly in terms of "diversity" [46,53,63].…”

“…The highest level of engagement was reported in four of 30 studies (13%) where collaboration was demonstrated across all four stages of the research cycle (see Table 4). Patients in these studies partnered in activities including, but not limited to: delineation of the scope of the partnership, contribution to study design, co-leadership on working groups during study execution, data analysis, dissemination activities, and adoption of decision-making roles on research steering/advisory committees [50,52,57,66]. Seven studies (23%) included patients in research priority setting at the broader level of biomedical specialty/ disease/condition, rather than at the individual study level [48,49,54,58,61,67,68].…”