People living through the years 1940-1970 saw huge changes to healthcare in the UK through the establishment and subsequent embedding of provision through the NHS. Little is documented about their experiences of these changes to primary care, or their attitudes toward everyday illness and treatment. This project seeks to address this by creating an archive of patient experience whilst this period is still within living memory. People who could have memories of healthcare from the early part of this period c.1940 will now be in in their 90s, the youngest of those who are able to remember the introduction and very early years of the NHS (1948-1950) will now be in their early 80s. As every year passes, we lose the opportunity to ask people to share their memories and preserve stories from their lived experience. It is important to work with older people to capture their personal experiences of primary care whist it is still possible so that this can inform the history(s) that are written about healthcare and the NHS. Outside of academia, through museums and heritage, this will contribute to wider societal understanding of healthcare provision, management of illness and how in the UK these are woven in with the NHS.

What will the project involve? 

This project builds on a Brigstow Ideas Exchange from 2020 entitled “From Folk to Pharma: Unlocking the medicine cabinet to understand lay approaches for managing common infections in the past and present”. Since this initial project extensive development work has been carried out. The research team wish to finalise the development stage through a pilot study to test their novel interdisciplinary methodology and approach, prior to an application to fund a much larger project.

Designing a novel interdisciplinary methodology 

Early interaction with public contributors highlighted that people’s experiences of primary care are not distinct/obvious to them. To accommodate this, the team have chosen to broaden the work to include community pharmacy, chemists, home remedies and self-management. This also aligns more strongly with contemporary experience of primary care. In addition, routine healthcare and experience of minor illness and conditions managed through primary care are interwoven and entangled into the experiences of everyday life. Consequently, memory recollection using traditional interview techniques is limited. This has driven the team’s development work to design a novel interdisciplinary methodology to facilitate memory recollection of these unremarkable events.

This methodology brings together a range of disciplines, drawing on the oral history interview and extending and expanding this by weaving in social science techniques. Memory elicitation is not widely used in historical research despite being a powerful tool widely used by social scientists (Harris 2015). This methodology adapts photo elicitation techniques successfully employed by anthropologists (Carrier and Quaintance 2012) by using archival photographs and images of historical items relating to healthcare. This was combined with group discussion, employing techniques from focus group interviews and public engagement encounters. This approach builds on work that suggests that public engagement can be employed as a useful research method, particularly suited to capturing people’s experiences (Crane 2022). The researchers have employed a participatory approach, working with stakeholders and public contributors to explore the contribution that historical archival collections can make to prompt memories of everyday healthcare. Relevant collections were identified at the Black Country Living Museum (BCLM) and Walgreens Boots Alliance Archive (WBAA).

Items were identified in both archives based on preliminary research alongside drawing on the expert knowledge of the archivist (WBAA) and collections officer (BCLM). These were then selected based on criteria of being from (or still available) in the period, visual in nature and easily accessible (no specialist knowledge required to understand them). Visual materials relating to everyday healthcare, such as photographs of chemist shops and advertisements, were presented to public contributors during a series of events with different (types of) groups; (1) a community craft club (organised and attended by senior people living independently); (2) a care home; (3) two remote events held via zoom with groups assembled by inviting the Bristol Centre for Academic Primary Care (CAPC) Patient and Public Involvement (PPI) members who had self-identified as ‘retired’. (Public contributors N=19. Age range 68-93). During these sessions, the researcher facilitated discussion about contributors’ memories of healthcare and explored the role that the archival images played in prompting recollection. This was further refined through an iterative process, where public contributors shared memories of things missing from the booklet and subsequent archival visits were informed by these discussions. Through these sessions the researchers gained an understanding of the types of memories people had; how archival images helped to trigger these; new types of images to include; that contributors found the sessions enjoyable and were keen to share their stories; wanting their experiences to be preserved; discussion naturally progressed between contributors to comparison of healthcare in the past and present; perceptions that healthcare professionals often dismiss older people because of their age. These sessions have led to (1) the design of a refined version of the memory booklet that includes a range of different types of historical images selected through this process. Contributors preferred this to be printed, colour (unless black and white images), A4 size with minimal details and no interpretation to accompany the images (2) a discussion topic guide that uses language developed in partnership with our public contributors. These are now ready to be tested.

Next Steps

This stage of the project seeks to test this methodology through a pilot study using the memory booklet and discussion guide. Work will commence with finalising study materials and preparing these for an arts faculty ethics application with the support of the public contributors advisory group. Once approved, recruitment will commence (using established links) and the researchers will seek to test the methodology in several settings. Firstly, as an in-person session as a discussion group. This will be offered to care home residents and the community craft club (if they do not want to participate, the researchers will invite people from other community groups that have expressed interest but have not contributed to the development work). Secondly, the researchers will test out discussion groups online via Zoom using their contacts to invite people to participate. Thirdly, one-to-one interviews will be offered remotely or in person. Sessions will be recorded and transcribed by a university approved transcriber and then analysed thematically by the research team. This analysis will inform the development of future research questions. Testing the methodology in this way will ensure that it is robust and fit for purpose to underpin future research. If the methodology works, the researchers anticipate that they will be able to collect stories of lived experience and curate an archive of patient memories.

Working with the activities co-ordinator at a care home (Oaklands), the researchers will co-develop with residents an arts and crafts workshop in response to the discussion session. This will be a public engagement activity so that it is inclusive to allow all residents the opportunity to participate without needing to consent. The residents’ artwork will be included in a co-curated exhibition in the residents’ lounge (in their gallery window) alongside some archival images from the memory booklet and some of the findings from the research. (The exhibition will be co-curated by the residents, activities co-ordinator and researcher). The workshop will be led by the activities co-ordinator and supported by the researcher who will assist but also observe and interact with residents to informally gauge engagement and enjoyment. Based on previous displays in the care home it is anticipated that the exhibition will generate further discussion amongst residents and between visitors (including clinical staff and residents’ friends and family). This will be informally monitored by the activities co-ordinator.

Who are the team and what do they bring?

• Barbara Caddick (Primary Care, Bristol Medical School) is a researcher in primary care and a social and cultural historian.  Previously, she has combined these research interests in an interdisciplinary project with a focus on the history of the management of common infections in primary care.
• Shoba Dawson (Primary Care, University of Bristol) has diverse experience within primary care research. She is involved in a portfolio of externally funded projects leading and providing expertise on systematic reviews and increasing ethnic diversity in research. Her core research interests include addressing health inequalities, systematic reviews and evidence synthesis methodology, medicines optimisation, multimorbidity and patient and public involvement and engagement.
• Rupert Payne (Primary Care and Clinical Pharmacology, University of Exeter) leads a programme of applied health service research focused on improving the safety and quality of medicines use in primary care. He has a particular interest in improving how we measure, evaluate and manage polypharmacy, and has methodological expertise in pharmacoepidemiology, electronic health records, and data science.
• Alastair Hay (Primary Care, Bristol Medical School) leads the CAPC infection group which internationally recognised research to improve the management of acute infections and the use of antibiotics in primary care.
• Hannah Clark (Activities Co-ordinator, Oaklands Care Home) spent 11 years working for Summerhill Surgery, Kingswinford as administration staff for the Care Home Team. Where she gained knowledge of care homes, elderly care, Deprivation of Liberty Safeguards, and Medications. She brings expertise in arts and crafts practice and workshop delivery in a care home setting.
• Sophie Clapp (Archivist, Walgreens Boots Alliance Archive) has extensive knowledge of the WBA company archive collection. She supported a project using memory boxes as a form of therapy with dementia patients in care homes. WBAA will supply recreated medical packaging and permit use of images from their archive to be used in study materials.

What is to come?

Through the curation of an archive of patient memories, this resource can then be used to help to answer many different research questions making important and rich contributions to historical research, public history, and heritage studies and the field of primary care. Through work with their stakeholders, this work will reach beyond academia, influencing the history presented to the public through the museum and archive sector. Through meaningful engagement with healthcare professionals, there is scope for wider impact, leading to guideline and policy changes, and the delivery of everyday healthcare services through to future clinical practice. For example, the research team have a particular interest in antibiotic use and will be investigating how antibiotics were used in primary care in the early years of the NHS (using patient memories and experiences to inform this work). This has potential to influence antibiotic prescribing and use in the present day, contributing to the antimicrobial research agenda.

This work will feed into a planned paper detailing the development of this novel interdisciplinary methodology. A second paper is also planned, drawing on the analysis from the pilot data to show the scope of this approach and to highlight that understanding patient experience in the past can contribute to healthcare in the future.

The project will also result in a co-designed workshop that can be rolled out to other groups in the future and a co-curated exhibition, which can be repeated with future participant groups.

The final outcome of this project is the intended scaling up of the project with a full developed and tested novel interdisciplinary methodology that can be used to create an archive of patient memories. Either through a fellowship for the PI (Wellcome, AHRC, UKRI Future Leaders) or a project (Wellcome, AHRC, ESRC).