key: cord-0898595-eqxafahk
authors: Chew‐Graham, Carolyn A.
title: Involving patients in research during a pandemic
date: 2020-06-28
journal: Health Expect
DOI: 10.1111/hex.13079
sha: 45f0a5b5f20939c5891b2760ca698eb2a5678b5f
doc_id: 898595
cord_uid: eqxafahk

nan

emphasizes that the input of patients, carers and the public when designing, implementing and evaluating research makes studies more effective, more relevant and often more cost-effective.

In this issue of HEX, Berzins and colleagues report a qualitative study in which service users and carers were invited to reflect on their experiences with safety and harm in mental health services.

The authors map their results onto an existing model, and the importance of communication stands out. It is of note that the interviews were conducted by the researchers using the telephone, rather than face-to-face, which is often held up as the optimum method to use.

However, Block and Erskine 5 suggest that interviewing by telephone has clear and distinct advantages, including providing researchers with flexibility and access that is unavailable through traditional methods. Being interviewed by telephone might also allow participants a level of disclosure that is not comfortable when an interview is conducted face-to-face.

Also in this issue of HEX, Raynor and colleagues describe an experience-based co-design (EBCD) process, within a trial, whilst Madden and colleagues describe using co-production methods in the development of a complex intervention. Both methods are not without challenges 6 which are likely to be magnified if the processes cannot be conducted face-to-face. Similarly, it would be challenging to hold a 'community jury' as described in Thomas et al's paper virtually. Moses and colleagues, however, describe successfully holding focus groups using videoconference to enable participants to participate remotely.

We are in currently the midst of the COVID-10 pandemic 7 and, due to current restrictions, our usual methods for including and involving people in the research process have become redundant. The need to adapt the methods we use for, and embrace technology to facilitate, patient and public involvement in all aspects of research is immediate. We need to do things differently.

I have drawn on the experiences of people contributing to studies that I am working on; people I have spoken to have emphasized the importance to them of continuing to contribute to research, but they also described challenges encountered with the technology required. One study PPI group member reflected on their personal preference for face-to-face communication in providing input, but also highlighted the risk to satisfactory input when internet connec- Stephen Dent, a lay member of a trial management group, reflected on joining the meeting virtually: a good chairman who allowed slight pauses in between items to allow people to have their say. Being able to join the meetings virtually allows me to keep a watchful eye on progress and to give opinions on any matters concerning the participation and welfare of the patients who are involved in the trial.

These observations provide excellent lessons for all of us involved in virtual meetings with lay members in our research. We can ensure that we provide support to our patient, carers and public contributors, particularly in learning how to use new technology (often as we are learning ourselves), and help reduce the digital divide. 9 We are not, however, in control of the availability of good internet access, which can result in the marginalization of people living in some rural areas. 10 As the pandemic restrictions are lifted, we have an opportunity to continue to do things differently, maximizing the use of technology where this may be the most appropriate method of ensuring patient and public involvement in research. We would welcome submissions to HEX from authors describing novel methods of patient and public involvement in their work. 

Supporting public involvement in research design and grant development: a case study of a public involvement award scheme managed by a National Institute for Health Research (NIHR) Research Design Service (RDS)

About sixty per cent I want to do it': health service researchers' attitudes to, and experiences of, patient and public involvement (PPI) -a qualitative interview study

NIHR research 2006-2019: policy intentions

Interviewing by telephone: specific considerations, opportunities, and challenges

Experience-based co-design: tackling common challenges

to-public-invol vement-parti cipat ion-and-engag ement-during-thecovid-19-pande mic/24640 May 2020 UK standards for public involvement

Digital inequalities and why they matter