Peter Bates

• Associate at University of Nottingham

Please may I ask if non-salaried Public Contributors conduct data collection interviews or Focus Groups with NHS patients as part of your study?

This means that the Public Contributor will either conduct the interview or Focus Group themselves or work alongside an academic researcher to cofacilitate the interview or Focus Group. The interview or Focus Group could be in-person or online. The Public Contributor may be offered reimbursement of expenses and recognition payments in line with NIHR guidance but they will not be employees or subcontractors.

In the UK, NIHR promote the coproduction of health research with citizens who have lived through the experiences under scrutiny. While this principle of engaging Public Contributors is laudable, the execution is mired in complexity. I am trying to find examples of studies that have addressed the issues relating to patient access and safety when the Public Contributor is not employed as a member of the academic team.

If you intend to obtain a research passport, letter of access, honorary research contract or another form of approval from your sponsor to enable non-salaried Public Contributors to conduct data collection interviews with NHS patients for research purposes, I would be pleased to hear about your approach. Similarly, if you have done this in the past, or know of colleagues who have done this, I would be delighted to hear what you have done.

There are many reasons for creating a directory of local community groups and activities. One reason is to support disabled persons access a life beyond the formal education, health and social care they receive. But this only works if the directory is a full and balanced reflection of the local community. I have been examining this issue in relation to SEND Local Offer Directories in England. Is anyone else interested in the questions arising from this? For example, why do community groups decline to submit their data? What is the best way to operate a partnership between informal community groups and statutory organisations? How do we benchmark the reach of the directory so that we can see if intersectional factors affect its representation of the community?

I’m interested in how Community Maps and Directories are shared and meet confidentiality, copyright and intellectual property obligations.

Going for written consent results in only 10-20% of the community appearing on the map (unless you do exceptional coproduction), while the really useful stuff is unpublishable! Navigating data ownership vs coproduction and meeting database copyright regulations appears to be a challenge with all kinds of power implications.

I’d be grateful if you could suggest some thoughts, point me to something to read or suggest who I might talk to.

I am interested in the relationship between staff and residents in nursing homes and staffed facilities that provide 24/365 care for aged or disabled persons. Can anyone point me to evidence to indicate whether this relationship is one of equality, empowerment or subordination? How is this expressed in the practices of the facility?

Has anyone set up or written about the use of reciprocal or reverse mentoring where the dyad consists of a healthcare professional and a patient?

Beds in homes and hotels seem to be getting wider, with single beds for confined to prisons, hostels and hospitals (and children), while most adults prefer a wide bed. Does anyone have access to any data to show what is happening to beds in hotels and in residential care facilities for older and disabled people? I am currently running a small survey to find out what is provided in residential care facilities in England (see https://bourls.com/ceJaK).

If anyone has any data on bed widths, trends over time, public preferences or evidence on the symbolic and functional significance of wide or narrow beds, I'd be pleased to hear from you.

Patients get involved in coproducing research alongside academic and clinical professionals. They generate ideas; are named co-applicants for research funding; sit on Ethics committees, Trial Steering Committees, Lived Experience Advisory Panels and Data Management & Ethics Committees; co-interview research participants and co-facilitate focus groups; analyse data, co-author papers and present findings to conferences.

When a single patient is involved in multiple ways, either consecuatively or concurrently, how are the risks managed to prevent a conflict of interests when roles overlap?

There is rigorous control of academics to help maintain ethical integrity, but I can find almost nothing on parallel safeguards for patients. Surely this cannot be because they actually have no power!

I have started to try and capture the ethical and practice issues that might occur when roles overlap, but am only at the start of this exploration. See my efforts so far at https://peterbates.org.uk/wp-content/uploads/2019/11/How-to-manage-overlapping-roles.pdf

and please send me some suggestions for publised material on this topic, or any suggestions for what needs adding to plug the gaps in it. All contributions will be properly acknoweledged.

Someone told me once that left-handed people tend to place more of their scores on the left side of an ordinal scale compared to right-handed people. Has anyone published any work on this?