A long and winding road. Improving representation from underserved groups: findings from the AvonCAP GP2 study.

Conference:

SAPC ASM 2024 - Bristol

Talk Code:

1D.1

Presenter:

Polly Duncan, Ruth Mears

Twitter:

@capcbristol

Co-authors:

Polly Duncan,* Ruth Mears,* Shoba Dawson, Glenda Oben, Rhian Pennie, Tanya Thomas, Catherine Derrick, Fanuel Olala Oyuga, Siân Bodfel Porter, Jennifer Oliver, Leon Danon, Adam Finn, Alastair D Hay, on behalf of the AvonCAP GP2 research group. *Joint first authors.

Author institutions:

University of Bristol

Problem

'No decision about me, without me’, a principle central to NIHR INCLUDE guidance, states that a wide range of groups should be involved in every stage of research, from priority setting through to maximising participation and interpreting results. Failing to include these patients means unrepresentative research findings. We aimed to promote recruitment of underserved groups, including those with lower literacy, non-English speaking and ethnic minorities.

Approach

AvonCAP GP2 is an ongoing primary care study investigating the burden of acute lower respiratory tract infections in adults (six practices in Bristol, half serving deprived populations, recruiting Feb 2022-Jul 2024). PPI strategy development involved: (i) an ethnically diverse patient and public involvement (PPI) group (n=14); (ii) awareness raising through community groups; (iii) ‘Easy Read’ and telephone study invitations; and (iv) two short promotional films: a generic ‘Why take part in research?’ and a second explaining study participation specifics. Patients could consent by phone, post, online or in-person. For non-English speaking patients, we translated study documents and films into 10 languages and employed bilingual researchers. A small anonymous dataset was collected on patients who declined consent.

Findings

From Feb 2022–Dec 2023, we screened 38,500 medical records, identified 9225 eligible patients, contacted 6829(74%) of those eligible and consented 3007(33%). Of these, 1286 people consented to the ‘data only’ study element, and 1721 to a ‘research visit’. Of those consented, 2770(92%) opted for ‘Easy Read’ information sheets and 73(2%), 173(6%), 2127(71%) and 634(21%) consented by phone, post, online or in-person respectively. Of those who had a research visit, 601(35%) reported watching at least one film and 587(98%) found them useful. We identified 167(1.8%) eligible non-English speaking patients, including 111(66%) who spoke one of ten translated languages, and have contacted 45; 33(73%) declined consent, 15(33%) verbally agreed to take part and 4(9%) consented. For patients with ethnicity recorded, the proportion of white and all other ethnic groups was 93% and 7% for those consented, and 88% and 12% for those declining consent (data Feb 2022–Mar 2023, missing ethnicity data for 6% consented and 42% declined consent patients). The consent rate for patients living in the most and least deprived quintiles was 31% and 48%.

Consequences

We have had some success promoting inclusivity and representing underserved groups, but it is difficult to know to what extent our approach has worked. Most opted for ‘Easy Read’ information sheets aligning with PPI feedback to keep information short and simple, films were considered useful and non-English speaking patients have been included. There is scope for improving inclusivity further through closer collaboration and building trust with different communities. Future research should evaluate inclusive recruitment strategies through a study within a trial (SWAT) or randomised controlled trial to identify what works and for whom.

Submitted by:

Polly Duncan

Funding acknowledgement:

The AvonCAP GP study is a University of Bristol sponsored study which is investigator-led, and funded under a collaborative agreement by Pfizer Inc. The views expressed are those of the authors. We would like to thank the PPI group for their valuable insights, especially Fanuel Olala Oyuga, who is a co-author.