Abstract
Summary
The James Lind Alliance (JLA) is a nonprofit United Kingdom (UK) organization that builds a set of research priorities for any given topic through the systematic involvement of practitioners, service users, carers, and stakeholders. In 2021/2022, we reviewed the impact of the JLA priority setting partnership (PSP) on adult social work research (2018). Our research question was “How has social work research responded to and changed since the 2018 JLA priority setting report; and where do we need to focus now?” We searched for research which aligned with the published priorities. We then interviewed 23 social work researchers to learn if/how they had engaged with the JLA PSP and what might be needed for future PSP exercises and research.
Findings
We discuss our findings with reference to other reviews of JLA PSPs. We conclude that the JLA PSP for adult social work was uniquely suited to the field given the history of person-centered practices, and this may account for some of the positive reviews of the report. The JLA process and ethos were respected and the report potentially raised the profile of adult social work research, while highlighting unaddressed questions.
Applications
Though there are many JLA PSP reviews, this study is one of the few to consider impact, we propose a review process could be applied to PSP exercises more regularly.
Keywords
Introduction
Public and patient involvement panels and lived experience groups are part of a growing trend of co-production in research in the United Kingdom (UK) and elsewhere (Social Care Institute for Excellence (Social Care Institute for Excellence, 2015). The James Lind Alliance (JLA) was established in 2004 as a vehicle for encouraging and activating this change in health services research. It initially enabled patients and their families to engage with research and act as consultants to propose questions which need answering from their own experiences. Essentially, the JLA has helped to formalize and operationalize growing demands that health services research becomes more embedded in and reflective of the society it serves, and, since its inception, over 100 reports have been published (Staley et al., 2020). The potential for extending this approach to adult social work in England was advocated by Moriarty and Manthorpe (2016) leading to the Chief Social Worker for Adults’ support for the initiative which then took place 2017–2018 (JLA, 2018). In England, adult social work is the term given to social workers whose practice relates to adults over 18 years of age. While professional qualifying training is largely generic, social work services reflect local and national government departmental divisions into “adults” and “children and families” social work with other sub-specialisms (Social Work England, 2023).
Social work research has a history aligning with co-productive values, with a review of social work papers considering that it found it has a “strong profile of democratised, participatory and user-led research” (Shaw and Norton, 2007). The aim of the JLA priority setting partnership (PSP) in adult social work, the first of its kind internationally, was to identify research priorities reflecting the views of people using adult social work services, and frontline social workers, rather than the traditional dominance of priority setting by research communities. This article reports the findings from a search of subsequent developments, and an exploration of how the research community has engaged with and perceives the value of the JLA recommendations.
A comprehensive review of the impact of JLA PSPs on a large scale has yet to be carried out by the JLA or others and an agreed methodology for assessing outcomes is not evident. However, their impact is often anecdotally reported very positively, and the JLA process continues to be used, has expanded internationally, and has high status from its renowned rigor. A few small-scale reviews have been conducted, mostly focusing on the perceived “successes” of various JLA reports from the perspectives of those involved in the process (Geldof et al., 2020; Kelly et al., 2015; Staley et al., 2020; Wray, 2018). We discuss these findings later in this present study in comparison to our own, but they, and we, are laying the groundwork for what may become a larger body of work examining the impact and effectiveness of this multiple priority setting exercise (see JLA, 2022). By better understanding the impact of the JLA report in respect of adult social work, we explore how such exercises can and do have a real impact. In the following section, we detail our process for examining the impact and reputation of the JLA social work report. We selected this report given our own research interests and the major investments in adult social care research by the UK's largest health and care research funder, the National Institute of Health and Care Research (NIHR), and as this exercise also marked a shift from largely clinical or condition focused PSPs to practice focused PSPs. The NIHR is partnered with the JLA and has produced several funding calls which cite the social work JLA PSP report, highlighting the likelihood of success for proposals which engage with its Top 10 priority research questions.
The JLA process consists of several stages that engagement with include multiple stakeholder groups, the main purpose is to ensure all voices are heard when setting research priorities (see Nygaard et al., 2019 for an overview of the processes and their variations). The PSP process is a guided activity where the JLA experts provide advice and leadership for groups. Generally, a PSP will include people with the following roles; PSP lead, PSP coordinator, information specialist, and the PSP steering group. The process will also include identifying relevant partners and stakeholders and working with patients and clinicians (as the health terminology puts it). Full details of what is involved in setting up a PSP are to be found in the JLA guidebook (JLA, 2021). The general stages of a PSP, once it is set up and funding secured, include surveys gathering research uncertainties, searching the literature for uncertainties identified by research or commentary, processing and verifying uncertainties from surveys and literature search, interim priority setting, and final priority setting (including five workshop phases). Finally, the Top 10 priorities are disseminated and published with the other suggestions also reported.
The purpose of a PSP is to ensure that research priorities evolve with patients’ (in adult social work this includes people with care and support needs and carers) and professionals’ changing needs for evidence, thus reflecting the landscape of current research activity, and thereby avoiding over-saturation of a single topic. Research priorities are proposed which must be translatable into research questions. There have been several reviews of the experiences of engaging in a JLA PSP, and both clinicians and patients report these positively, with clinicians particularly acknowledging the need to change practice and listen more to patients (Jongsma et al., 2020). Some patients feel that a JLA PSP has a responsibility to ensure engagement with priorities by the research community (ibid.). Generally, since a PSP exercise is viewed as positive by those taking part, in our research we wanted to explore if this was the case for social work and if and how the social work research community has engaged with its JLA PSP.
England's adult social work PSP was launched when the Department of Health and Social Care's Chief Social Worker for Adults, Lyn Romeo, agreed it would be an opportunity to contribute to the growing importance of social work research, and perceived the benefits of the rigor and status of a JLA approach. It needed to involve and fund multiple stakeholders, including people using social work services, carers, advocates, organizations representing service user groups, social work practitioners and managers, other relevant professionals, and researchers across its different stages. A steering group was formed (membership is at https://www.jla.nihr.ac.uk/priority-setting-partnerships/adult-social-work/who-was-involved.htm).
Method
This present research had two phases. In the first, a call for evidence was widely publicized through social work research and professional communities inviting social care and social work researchers to send evidence of their engagement with the JLA review (social care researchers were included as they often include social work in their studies). We also conducted literature searches using the JLA questions to assess if and how research had directly addressed the questions proposed, and to surface possible participants in the research (either via seeking their evidence or views) (see Authors). The second phase was a thematic analysis of semi-structured interviews with participants to review research engagement and evaluation of the JLA report.
Participants
We used a combination of uncontrolled quota sampling (ensuring the participant worked in social care or social work research), and snowball sampling (where participants were encouraged to share the invitation to participate among their colleagues) (Bhardwaj, 2019). We do not claim this sample to be exhaustive or representative of the social work and social care research community, the size of which is unknown in the UK, however, we did achieve variation in experience level and range of previous social work research experience (see Supplement A). We directly invited 96 researchers (either known to the research team or identified through the literature search) to take part in an interview, some of whom were former social workers. We also advertised the research invitation in adult social care and work research forums, newsletters, and via social media. It was not a requirement to have heard of the JLA report prior to the interview. Twenty-three agreed to be interviewed, ranging from established and emeritus professors to current or recent doctoral researchers (see Supplement A). We gave assurances of confidentiality. Ethical approvals were secured from King's College London. The study was funded by the NIHR National Network for Social Work and Social Care Applied Research Collaboration (ARC).
Materials
Our search for literature used the search engine Google Scholar, as well as accessing databases available to both (anonymized) and the (anonymized) libraries. Additionally, replies to the call for evidence were added to this review, with some papers kindly sent by their authors and later by interview participants.
Procedure
The literature search consisted of searching for each question listed in the full long list of JLA priorities for social work research using the search engine Google Scholar, searching social and social care university departments’ research pages, and NIHR webpages listing funded research projects. Further information was added when researchers responded to the call for evidence in mid-2021. The search followed the “berry-picking” structure from information studies (Bates, 1989) and is reported in Waterman and Manthorpe, 2022). Literature was found using a variety of methods, we were specifically looking for research which explicitly engaged with the JLA report, and it is not within the remit of this study to provide a comprehensive overview of adult social work research from 2018 to 2021. The combined approach of reviewing literature and interviews meant our study focused on the engagement more broadly than that which has been published in the JLA PSP report.
Potential interview participants were contacted if they were social work or social care researchers attached to a university in England. Researchers outside England were not contacted due to the nationally devolved nature of social work and social work governance, and the focus of the JLA report on adult social work research in England.
Interviews were conducted using Microsoft Teams or Zoom, and audio recorded with permission (for the interview schedule, see Supplement B). Where participants requested, parts of the interview discussion were “off the record” and cannot be quoted. Audio data were selectively transcribed for thematic analysis (Clarke & Braun, 2014). All participants were given numbered participant pseudonyms, and are referenced as such in this article (e.g., P1). The research team is female with socio-legal and social work research expertise and one was instrumental in securing support for this JLA PSP exercise.
Findings
Findings are reported in two sections, firstly briefly outlining the results of the literature search to establish if research had been published which related to the JLA PSP Top 10 and a longer list of other research priorities. Following this, we report and discuss the interview findings.
Literature search
Our rapid literature search informed the interview schedule and helped set the context of the general trends in adult social work research in England since the JLA 2018 report (for details see Waterman and Manthorpe, 2022). It thus acted as an informal scoping exercise. However, since we only searched for published research we did not access research that had not yet been published or publicized. It is for this reason that the interview data inform most of this present study since participants were able to comment on possible proposals and research in development as well as funded studies.
The JLA priority research questions, both the Top 10 and the remaining 61 (the long list), are largely broad in their scope, enabling researcher interpretation and application of expertise such as choice of a methodological approach. We found some of these research questions were being answered by several studies, but these often only partially addressed an element of the research question. The Top 10 questions had received the most attention (in both research outputs but also in funding calls, a relationship explored in interviews). Of the 61 research questions in the long list, only 28 appeared to have had no engagement at the time of writing. The NIHR has a rolling funding call for projects engaging with the JLA PSPs, but it primarily asks researchers to focus on the Top 10 questions. Additionally, where we found no published work this does not equate to no engagement, only that funded studies have not been produced and published from these research questions. Just over half (33/61) of the long list of research questions had been or were being engaged with in published or ongoing research. (For a full list of the PSPs categorized by engagement, see Supplement C.) Essentially, the data give a broad overview of the field of adult social work research to date relevant to the PSP, but it by no means sheds light on all research activities and does not take account of the intricacies and complexities of day-to-day research practices, methods, questions, and findings. The interview findings help shed light on how researchers have used the report, why researchers have engaged with the questions listed by the JLA PSP, what priorities remain and new areas for consideration.
Interview themes
In the following themes, we explore how social work scholars have used, interpreted, and engaged with the JLA PSP social work report. As discussed, this report was the first of its kind in social work, and while it has undoubtedly had an impact, through our interviews we can also analyze how and why, and what this might mean for future JLA PSP exercises.
Awareness of the JLA social work report
Of the 23 participants (P), only two were not familiar with the JLA social work report before the interview. Awareness of the report was linked to funding calls, with several NIHR funding calls specifically citing the report or initial engagement with the PSP (with some participants having taken part in the consultation phases). Specifically, P19 stated that the JLA report was useful as: you always want to know that you are answering questions that are valuable, but it is a challenge because your own research area doesn’t necessarily align.
While most participants were aware of the report, many were prompted by the interview to reengage with it to remind themselves of the Top 10 priorities. This was expected given our review was undertaken 4 years after publication. P8 said: Does the report still feature in the meetings I’m a part of? I haven’t heard the JLA report referred to once, I think people are much more oriented towards what is really pressing at the moment….
JLA process and impact
The JLA process was respected, and even participants who had not been directly involved assumed that it had involved a lengthy, in-depth process that had resulted in relatively unbiased results. The perceived impact of the JLA ranged from increasing funding for social work research to raising the profile of research in social work education to encourage more symbiosis between the two in social work education.
The JLA PSP activity, though participants acknowledged its potential limits, was seen as a positive exercise, particularly by those who described themselves as social work researchers. Questions were raised about its continued utility 3 or 4 years after publication, and, should the process be repeated would different parties be involved to increase diversity, as well as reviewing what has changed in social work and social care, particularly following the COVID-19 pandemic (such as how Long-COVID may affect social work and social care, the impact of the pandemic in care homes, and how people might perceive care services pre- and post-COVID).
The JLA exercise and its report were perceived as useful and added to the knowledge and resources available for social work researchers. P17 summarized their thoughts by saying: Anything we can do to highlight and encourage research in social work and raise the profile is a good thing, and that's what this report did, promoted understanding and priorities in teaching as well. It's part of the momentum.
The questions
This general format (a Top 10 and then a long list) was described as easy to understand, however, few participants had engaged with or had knowledge of the full long list of priorities. The Top 10 priorities were seen as timeless by most, largely because the context which they seek to address seems ever-changing, particularly the legal and financial context of social work practice. Conversely, it was also acknowledged that the Top 10 priorities had received much research attention, and there was a sense that, without impactful, longitudinal changes resulting from research and working in conjunction with local and national stakeholders and governments, then continuing to research these topics would not yield different or more useful results. The long list of questions, though referred to by some participants, was generally acknowledged as having less impact, and thus received less attention from both researchers and from funders of research.
Overall, participants reflected positively on the list of priorities, but raised questions regarding the fragmentation of the social work and social care “voice,” recognizing the diverse service using population, ensuring impact from research was viable and long-term, working with local authorities and government to ensure real change resulting from research findings. P2 reflected that the list of questions produced by a PSP generally has kudos among the research community: JLA's large scale exercises are so rigorous it gives people confidence, so can supersede the need for the smaller ones we are seeing happening now, there is a need for the JLA to continue and do more of these exercises.
Given this general respect for the JLA process and the subsequent PSP questions, several researchers mentioned making use of the questions for progressing with their research. For example, P13 said: The main way I’ve used it if I’m honest is to justify questions when I’m putting in grant applications.
The future of social work research
Focussing on the JLA report, we asked whether participants considered the JLA priorities relevant for the future or if new priorities should be identified. As stated above, most considered that the JLA report continued to be relevant for current research and the Top 10 priorities remained important for social work and social care researchers. Additionally, participants commented on the continued relevance and utility of the JLA report when applying for funding as it had engaged thoroughly with different stakeholders and could contribute to some of the required stakeholder engagement practices.
Within this theme, participants brought attention to a need to focus on impact, implementation, and a culture shift within social work research (and the systems on which it relies for change) which are being addressed by the recently funded UK IMPACT Centre among others (IMPACT, 2022, ImpACT GROUP, 2021). Some participants identified a need to reunite the “social work voice” (bringing together children's and adults’ social work professional activity) and address the fragmentation of social workers’ professional qualifying programs (there are different educational routes available for qualifying programs and different employer investments in England) to enable significant change in day-to-day practice and priorities. Generally, it was acknowledged that the JLA's role is to co-produce research priorities, and so implementation and impact were perhaps beyond its purpose and remit.
Within this theme, social workers raised their own interests, as well as the general concern that measuring the impact of such exercises (JLA PSPs and other lived experience engagement activities) is not commonplace. Researchers commented on the need to ensure that such activities were part of meaningful research practice, and, as P7 stated, they: need to have the sense that this [JLA PSP] isn’t just going to be stuck on someone's shelf … even if we’re making differences in small steps. The JLA is not the bible for [social work] research but it's just stirring in some more information … which is always helpful.
Discussion
This research shows the impact of the JLA PSP report on adult social work research 4 years after publication. Overall researchers were positive about it and have helped us to understand why this PSP was engaged with so broadly, and what is the appeal of engaging with such a report. This study, which took place 4 years after the publication of the PSP, has shown that the Top 10 priorities have been engaged with to some extent in research, and some items on the long list of priorities have been addressed. Establishing how the JLA PSP report has had an impact on social work research, and to what extent it has changed the landscape is a more complex question, addressed in part by participants’ acknowledgment that some questions are perennial. As participants themselves noted, as social work and social care policy changes, research questions affected by this require new research, such as questions in relation to funding social care. Overall, we suggest that the engagement and influence on researchers of the JLA PSP have been positive, and a broad range of topics have been engaged with and funding successfully sought.
Several limitations need acknowledging. Firstly, the JLA PSP report was subject to some criticisms from interview participants, largely citing the format of the publication. Through publicizing the Top 5–10 priorities widely, many researchers felt others were at risk of being overlooked, or remained largely unknown. However, this criticism comes with the caveat that many researchers cited the digestibility or clarity of the report, making the Top 5–10 a necessary approach. Other criticisms focused on the lack of priorities explicitly aimed at improving diversity and inclusion which is an implicit criticism of those consulted for their views. This might be addressed in future PSPs given the increasing importance across research in general given by funders such as the NIHR.
Staley et al. (2020) reviewed a variety of JLA PSPs, focusing on the processes employed during the PSP and the context of the specific research field. They interviewed 20 participants spanning researchers, clinicians, and patients who had a collective knowledge of 25 different PSPs. Interviews asked about the perceived success of the PSPs they knew, and what influences might have contributed (such as historical values, culture, and funding opportunities). Staley et al.’s (2020) work thus complements our research. Overall Staley et al. found that the greater the resources, attention, and funding interest, the greater the likelihood of “successes” for the PSP. Herein lies the challenge of measuring success across PSPs, the context of each research field is vastly different. Social work research has benefited from the JLA PSP through highlighting growing research opportunities and increasing research awareness, particularly with funders, such as the NIHR-specific funding calls referencing the JLA PSP report. And, as our literature review indicated, it is difficult to measure actual success of engagement by publication output alone. Unfunded proposals are unaccounted for, and the breath of the research priorities means that a research proposal is likely to specifically cite one or more PSPs’ recommendations explicitly.
In a similar vein, Wray (2018) carried out a comprehensive review of the progress 5 years after the JLA PSP for Tinnitus had been produced and found that though many studies had been published to address the priorities, their quality varied greatly, as did the definition of tinnitus itself (see Hall et al., 2013, for the JLA PSP report on Tinnitus). This raises the question as to the extent to which we can assert the Top 10 questions have been answered if we do not also investigate the quality of the research addressing them. Our research and Wray's (2018) both point to the overwhelmingly positive impact a JLA PSP makes, particularly for raising the profile of a given topic, however, it is important for future research to conduct thorough evaluations of PSPs to ensure the positive impact continues and is based on good quality research. A further comprehensive review mirroring that approach of Staley et al. (2020) but for each individual PSP might be considered following a PSP exercise, to establish how each research field reviews any success, and account for individual differences rather than highlighting the disparities across research fields.
Geldof et al. (2020) undertook a review of the impact of the 2016 JLA PSP for irritable bowel disease (IBD) with a focus on clinical trials. This review took place 3 years after the IBD PSP was published, and therefore had a similar timeline to our own review (carried out 4 years post-publication). Their review concluded that the Top 10 IBD priorities had been engaged with, but most studies (20 in total) had addressed priorities pertaining to new medical treatment rather than the patient-oriented priorities of symptom and pain management that had featured strongly in the PSP priorities. Geldof et al. (2020) purposefully excluded research funded by industry sponsors given the assumed bias toward medical treatment, yet still most studies engaging with the Top 10 priorities concerned treatment. Geldof et al. (2020) have thus highlighted the importance of the wider culture of the research in any given field, and how this can influence the impact of any PSP.
The benefit and value of social work research are not always evident to many research funders, but it aligns well with the principles of person-centered research and public and patient engagement (NIHR, 2021). Social work is historically focused on the whole person. Where clinical research PSPs may focus on a specific diagnostic group, or illness, the social work PSP tackles the myriad of difficulties people encountering social work may face. The JLA PSP for social work has its own challenges in attempting to capture such a diverse group, some of which our interview participants highlight. However, by focusing on the whole person and the breadth of knowledge required of social work, this PSP provided the attention and focus needed for the field. Thus, this JLA PSP might have avoided the complications of other more clinical PSPs due to the very nature of the field, and the relative size of the social work research field in comparison to clinical research and funding. As Gibson (2019) stated, in clinical research (specifically cancer research) there is often a mismatch between funded research and the priorities emerging from PSP exercises, a power struggle between funders and commissioners and those conducting and participating in research. Though this tension is not unique to clinical research, given social work history and limited funding sources this may be less problematic. Additionally, social work is largely a publicly funded activity, and tension between investment opportunities, private pharmaceuticals or technology, and other tensions unique to clinical research are avoided. Researchers did not raise this when being interviewed, and indeed researchers stated that the trusted engagement practices coupled with the NIHR-specific funding calls meant the report and the concerns of people with lived experience of social work were taken forward in new studies. The difference between research field contexts should not be underestimated, given social works embedded person-centered principles, it is well suited to the JLA PSP exercise and thus as we have found in this research, has had a positive impact.
Limitations of the study
There are several limitations to this study which must be acknowledged. Firstly, the limitations of our research are acknowledged, these include the scope of our literature search, which, although useful for identifying the breadth of engagement and how priorities have been transformed into research aims and questions, was not a conclusive, comprehensive review. We cannot claim that our search identified all studies that engaged with the JLA PSP and overlap may have had other causes. It may also be useful for future reviews to map how each research question has been engaged with and quantify the engagement with each JLA priority (as was done on a small scale by Geldof et al., 2020). Secondly, this present study has addressed how some researchers engaged with the JLA PSP, and, as some participants stated, this may have been before or after their initial research idea. We cannot assume a causality between engagement and PSP although researchers nonetheless cited the usefulness of the report particularly when applying for funding. This present study focused on the context of social work, in England and how the JLA PSP has been engaged with nationally. This somewhat limits the scope of our findings, however, conclusions drawn about the general use and interpretation of such exercises may be applicable in other jurisdictions and similar PSP exercises. The literature regarding the impact of a JLA PSP post-publication is scarce, therefore we were only able to draw upon a few similar evaluations. We encourage the JLA to incorporate a review process and thus improve the evidence base for its approach.
Conclusion
This study shows that the JLA PSP report provided some clarification for both researchers and funders when prioritizing and choosing which research questions merit attention and funding. The JLA report became a trusted source of guidance for both funders and some researchers alike. In any future PSPs on the subject, there may be a need to explicitly acknowledge the interface of adult social work and social care. As researchers have identified, and as our brief literature search shows, research has addressed the Top 10 questions, but this does not mean that the topics are exhausted or that implementation is underway. A further review could assess the impact of the implementation of findings from research undertaken due to the PSP. Additional focus could be paid to those questions not addressed if they remain relevant. The credibility and rigor of the JLA process add to its importance when thinking about its impact, but little work has been done to review such reports. This research, along with that of Staley et al. (2020), signifies the beginning of work which must be conducted to evaluate what long-term and system-wide impacts priority setting exercises have, including but not limited to those conducted using the JLA approach.
Supplemental Material
sj-docx-1-jsw-10.1177_14680173241258924 - Supplemental material for The 2018 James Lind alliance adult social work priority setting partnership report: Its use and engagement
Supplemental material, sj-docx-1-jsw-10.1177_14680173241258924 for The 2018 James Lind alliance adult social work priority setting partnership report: Its use and engagement by Chloe Waterman and Jill Manthorpe in Journal of Social Work
Footnotes
Ethical approval
Ethical approval for this project was given by King’s College London Research Ethics Committee, ethical clearance number: MRA-20/21-25356.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This study was funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) National Priorities Programme in Adult Social Care and Social Work. The views expressed are those of the authors and not necessarily those of the NIHR or the Department of Health and Social Care.
Declarations of conflict of interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Acknowledgements
The authors acknowledge the following for their contribution to this article: We thank all interview participants, as well as the many respondents to the call for evidence. We are grateful to Rekha Elaswarapu, Patient and Public Involvement and Engagement Advisor, NIHR ARC South London.
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References
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