Background: Barriers preventing oncologists from engaging patients as research partners remain. This study aimed to understand oncologists' barriers to patient engagement and involvement (PEI) in research and identify solutions to overcome barriers.
Research design and methods: The study consisted of three phases: I, insights research (n = 6); II, qualitative research (n = 30); III, a Working Group of PEI experts providing recommendations (n = 10). Five hypotheses representing oncologists' barriers to PEI identified in phase I were tested in phase II: A) preference for physician-led approach to medicine; B) limited PEI value in research processes; C) misconceptions about approaching PEI; D) practical barriers to PEI; E) traditional research dynamics preventing PEI.
Results: Hypotheses C, D, and E were identified as the most critical and ranked in descending order of difficulty to overcome (D, E, and C). Solutions were ranked according to importance (whether oncologists perceived barriers as prominent within their communities) and feasibility (for stakeholders to find solutions). Solutions included leveraging institutional PEI teams, allocating funding for PEI, practical/logistical support for patient research partners, incentivising PEI, facilitating training, creating a patient research partner directory, and PEI guidelines.
Conclusions: Enhanced support for oncologists and institutional incentives to encourage PEI in all aspects of research are required.
Keywords: Oncology; patient authors; patient engagement; patient involvement; patient research partners.
Patient engagement and involvement (PEI for short) means healthcare professionals working in partnership with patients to plan and carry out research. However, PEI in research is not always achieved. In this study, the authors wanted to look at some of the barriers preventing cancer doctors from engaging and involving patients in research. They also wanted to find possible solutions to help overcome these barriers. Using interviews with 30 cancer doctors from the UK and US, 5 different barriers were identified: 1) some doctors prefer a doctor-led approach to medicine; 2) some doctors do not recognize the value of PEI in research; 3) practical issues preventing PEI in research; 4) traditional research processes that can prevent PEI; and 5) some doctors are unsure how to approach PEI in research. Barriers 3, 4, and 5 were ranked by cancer doctors as a priority. A group of 10 PEI experts, including patient advocates, then came together to look at the research findings and propose solutions. These included: linking up with specialized PEI teams in universities and hospitals; specific funding for PEI; practical support for patient research partners (e.g. payment for expertise as research partners), providing incentives to encourage PEI; training opportunities; a directory of patient research partners; and further guidelines to encourage PEI. While there are many examples of PEI in cancer research, cancer doctors require more support and resources to enable PEI to be commonplace in all areas of cancer research.