Patient‐initiated recruitment for clinical research: Evaluation of an outpatient letter research statement

Abstract

Background UK Hospital Trusts are charged with increasing patients’ research awareness and willingness to take part in research. This includes implementing strategies to encourage patient‐initiated enquiries about participation.ObjectivesTo evaluate the impact of a research statement inserted in outpatient letters in one clinical service, and to derive suggestions on potential steps towards increasing patient‐initiated recruitment.SettingA medical outpatient clinic of a research‐active hospital trust, serving an inner‐city multi‐ethnic population across two boroughs.MethodsPre‐intervention and post‐intervention questionnaires were administered face‐to‐face to new patients. Questionnaires included closed questions and one open comments section. Data were analysed for frequencies, with thematic coding of open‐ended responses.ResultsThe response rates were 87% for the pre‐intervention survey and 92% for the post‐intervention survey. In the post‐intervention survey, 85% of patients did not notice the research statement in the letter. More than half found the statement “a little unclear,” whilst one‐third considered it “clear.” Three‐quarters of respondents perceived the statement to be “a little helpful.” Only one person enquired about participating in clinical research having read the statement in the outpatient letter.ConclusionThe analysis suggests that simple, single‐solution approaches such as including research statements in outpatient letters are unlikely to be sufficient to significantly facilitate patient‐initiated recruitment. Recruitment efforts need to take into consideration the diversity of patient constituencies including the reasons they seek health care, and how patients can meaningfully access information (research literacy).

An Analysis of the Learning Health System in Its First Decade in Practice: Scoping Review

“…Notions of benefit and risk are likely to change over time, both for a specific individual and within the context of a given institution. Ongoing conversations about the risks and benefits of participation, and what the idiom research refers to, will be critical to achieving adequate engagement and ensuring that willingness to participate is not confounded with a need for care [64,65]. Furthermore, potential users of health care services may anticipate receiving further and/or advanced treatment for long-term and rare diseases.…”

Research campaigns in the UK National Health Service: patient recruitment and questions of valuation

“…Reported 'barriers' to participation include: organisational factors, lack of training, lack of eligible patients, lack of patient trust in clinical research and expectation of harm (Ford et al 2008, Treweek et al 2010. Our findings from two surveys (McKevitt et al 2015, Wienroth et al 2018 among clinical populations suggest that low awareness of what 'research' is and what research participation means are also important factors.…”

“…The NIHR itself claims that involvement of the public in developing and governing research contributes to the effectiveness and efficiency of both research and the patient recruitment process into clinical research itself (2015: 8). These framings, forming part of the NIHR imaginary of patients and publics in research, do not necessarily reflect public understanding of research participation and involvement, as findings from surveys of patients about clinical research have shown (Adam et al 2015, McKevitt et al 2015, Wienroth et al 2018.…”

“…, Wienroth et al . ) among clinical populations suggest that low awareness of what ‘research' is and what research participation means are also important factors.…”