Adopting a conceptual framework that foregrounds health equity
A major requirement for progress in mainstreaming is the development and adoption of a conceptual framework that foregrounds the issue being addressed, in this case, health equity (Sen et al., 2007: 85). An analysis of CLAHRC-NWC formal documents showed that attempts were made at an early stage to define the concept of health inequalities to be adopted in the organisation. Although the word ‘mainstreaming’ was not explicitly used, there were clear statements about the importance of, and commitment to, embedding a focus on action to reduce health inequalities in all structures, processes and projects.
Key examples of these statements were found in the original funding proposal submitted in 2013, the website and promotional materials. These emphasised the collaboration’s commitment to ‘produce applied health research that contributes to tackling health inequalities through improvements in public health and chronic disease’ (NIHR CLAHRC NWC, 2013: 3). The concern with health inequalities came into focus with the funding proposal’s acknowledgement that the NWC has one ‘of the most striking variations in health and wellbeing in England’ (NIHR CLAHRC NWC, 2013: 6). The proposal went on to argue that health equity would be a cross-cutting issue and a CLAHRC-wide responsibility. It identified theme management as the primary site for monitoring and assessing the impact of activities on inequalities:
Each Theme will have a Theme strategy committee (TSC) chaired by the Theme leader and comprising Theme managers (...) The TSC will be responsible for (…) assessing the impact of the projects on health inequalities and patients outcomes. (CLAHRC-NWC Full application to NIHR, p. 20)
Despite the prominance of these statements two interlinked factors potentially diluted the message that addressing social inequalities in health was a CLAHRC-wide responsibility. First, the location of the message in the funding proposal may have been problematic. Work on health inequalities was described within the Public Health Theme, potentially suggesting that it was the primary responsibility of this theme. Whilst this positioning was argued to be a response to the emphasis the funder placed on a thematic structure for the programme, it would have been possible to locate health inequalities as a cross-cutting theme. Additionally, whilst health inequalities were mentioned at several other points in the funding proposal, the prominence varied significantly across the descriptions of specific themes. Second, whilst a policy on public involvement and a strategy for capacity building were produced, there was no explicit strategy or policy on how the focus on reducing health inequalities would be mainstreamed across the CLAHRC-NWC. We will discuss the implications of these factors in the next section.
Initially, CLAHRC-NWC took three important practical steps in pursuit of the health equity objective. First, it appointed senior staff with an international track-record of work on health inequalities, to take responsibility for the mainstreaming agenda from the point the original funding bid was developed. Second, it articulated an explicit definition that recognised that inequalities in health cannot be tackled without fully understanding and addressing the wider structural determinants. This marks a shift from the dominant framings of health inequalities in the health sector as individualised ‘lifestyle-centric’ to recognise how ‘organisation and structural factors are the cause of social inequalities that affect health outcomes’. (NIHR CLAHRC NWC, 2013: 8) Third, in 2015 CLAHRC-NWC co-produced the Health Inequalities Assessment Toolkit (HIAT) to support researchers and others to assess the extent to which planned activities were sensitive to health inequalities (Porroche-Escudero and Popay, forthcoming).
The HIAT further highlighted CLAHRC-NWC’s emphasis on the upstream socio-economic causes of inequalities. However, seeking to embed a conceptual framing of health inequalities that was sensitive to social inequalities, public involvement and co-production across all CLAHRC-NWC activities and within Partner organisations raised several challenges discussed in the next section.
Developing structures for embedding health inequalities awareness
The literature on Gender Mainstreaming highlights institutional commitment to develop relevant “capacity” as another indicator of progress. Analysis of documents and discussions with research participants revealed that CLAHRC-NWC invested considerable resources in strengthening its infrastructure to support capacity in relation to the mainstreaming of a health equity focus in all its work. For example it:
- Invested in specialised staffingto support Partners staff to embed a health equity perspective across all levels of the organisation and its portfolio of research and related activities.
- Provided routine training and individual bespoke advice to all staff, PhD students and Public Aadvisers.
- Partnered with professionals from other regional and nation agencies to advance the goal of mainstreaming health equity beyond CLAHRC-NWC.
- Allocated a dedicated budget for training, dissemination activities and the development of resources such as a website, training materials and accessible HIAT leaflets.
The collaboration also established procedures and processes to report on and monitor progress on embedding a focus on health equity in all activities. For instance, the Steering Board (SB) endorsed mandatory HIAT assessments for all activities seeking funding support from CLAHRC, including interns and PhD students. In addition, the SB requested that quarterly progress report tempates be modified to include a section for reporting on the extent to which a focus on health inequalities had been integrated into activities. This change was a direct response to a request from the HIAT staff for action to increase accountability amongst core and Partners staff, as well as to normalise health inequalities monitoring.
Implementing health inequalities mainstreaming across CLAHRC-NWC activities
For any attempt to mainstream health equity to have far-reaching and lasting consequences on health policy, practice and research it must first create institutional-level changes. Yet, institutional-level change is stubbornly difficult and can take years (Lancet, 2019). Additionally, as CLAHRC-NWC is a partnership, these changes had to impact on multiple diverse organisations. CLAHRC was also operating in a testing socio-economic and political context characterised by severe reductions in public expenditure, which impacted on local government in the NW particularly heavily.(Whitehead et al., 2014) Thus, it is not surprising that CLAHRC-NWC had only a modest impact at this level. Never-the-less the examples of institutional change we identified, described by a university staff member ‘as oases in a desert’ provide a ray of hope for creating an environment for change that is sensitive to health equity.
Five indicators of institutional-level changes relevant to health equity mainstreaming are identified in the literature: health inequalities sensitisation; mainstreaming through toolkits and reporting; achieving better health equity sensitive evaluations; fostering local collaborations that include practitioners and community members to address social inequalities in health; valuing public involvement; and achieving reductions in health inequalities. Not surprisingly, given the short timeframe of CLAHRC-NWC and the difficulties involved, we did not expect to find examples of an impact of mainstreaming on reducing health inequalities.
(i) Health inequalities sensitisation. Compulsory HIAT assessments, one-to-one support, specialised training sessions, informal learning opportunities, dissemination events, public engagement activities, resources (such as quizzes and games) and participation in research projects all contributed to increased awareness amongst Partners, PAs and the wider public about the social and economic causes of health inequalities. Research participants described HIAT assessments as ‘triggering a lightbulb moment’ and ‘broadening horizons’ by revealing how ill-health is linked to socio-economic factors. Others mentioned that training was ‘transformational’ because it challenged the notion that health inequalities are beyond professionals’ remit and helped them to recognise ‘that health inequalities is not the responsibility of professionals specialised on health inequalities; it is everybody’s business’. PAs also stated that CLAHRC-NWC helped to create an environment that normalised discussions around health (in)equity.
(ii) Mainstreaming through toolkits and reporting. As noted earlier, HIAT assessments of all activites and regular reporting on health inequalities were mandatory. A subcommittee of the SB reviewed all HIAT assessment reports and gave feedback on how to improve the health equity focus of proposed Proposals that failed to complete the HIAT were Some respondents described the emphasis on assessments and reporting as a way to remind people that health inequalities are ‘everyone’s responsibility’. Others described this obligation as a ‘carrot and stick’ approach that was important because ‘academics wouldn’t have used it otherwise’. There were multiple comments about the benefits of the HIAT assessment process. As one Intern noted:
the health inequalities assessment toolkit was great. That was all new to me and very useful and that thinking upstream stuff it was a lot of food for thought. I felt like my brain was running out of my ears to be honest but it was really good (CB.int.008, Intern)
Similarly, an NHS Partner involved in evaluating a new model of care commented that:
Rather than simply thinking about outcomes, the HIAT tool allowed us to think more effectively around the data we were collecting and how we were collecting it, as well as how we can interrogate the data to gain further insight around socio-economic and demographic factors (HIAT feedback form, NHS Partner)
(iii) Achieving better health equity sensitive evaluations. As Gita Sen et al (26:84) argue, getting the right data and indicators are a prerequisite for more effective actions on health because: “what gets measured is what gets done”. Partners and PAs reported that HIAT training and assessments helped them to develop evaluations that were sensitive to health equity and enhanced their practice. For instance, several respondents agreed that in the NHS and LA ‘things get implemented but nobody measures the impact of implementing something’. And as this partner commented, evaluations sensitive to health equity brought to the fore issues of accountability and ‘wise’ expenditure of public money:
I think probably we’ve conducted more robust evaluation than we would have done if we hadn’t been involved with CLAHRC (...) I think that’s helpful because it makes us consider whether what we’re doing is effective and how it can be changed rather than just keeping plodding on doing what we’re doing because we think it’s the right thing to do. (ESK.int.190118, Academic Partner)
Most respondents stated that they had learnt about the importance of collecting disaggregated data by socio-economic status and other relevant determinants of inequalities to measure any differential impacts of interventions. This senior CLAHRC-NWC staff member emphasised this learning:
[Partners staff] the identification of the health inequalities and measurement has been real learning and real change, particularly around using disaggregated data (...) in undertaking their evaluations (...) They’ve had to look at how do we collect the data in that way and that’s been real, real learning for them (PPP.fg.02, Academic Partner)
For one NHS Partner the realisation that there were ‘limitations of data coming’ from their organisation was ‘disappointing’. Others conducting reviews found the data limitations of primary research ‘frustrating’ and decided to report these gaps in their outputs. Through reporting, they hoped to make visible the need for disaggregated data in all research projects. Another team of NHS partners changed their organisational structures to get more health equity sensitive information going:
quite a long way to adapt their current practices to design their data capture questionnaires that go right across their organisation, not just for the evaluation but for the way that they record and track their service users, the disaggregated data because they weren’t collecting it in that way before. So that’s quite a big service change for them to make so they’ve been willing to take on board some of the ideas and suggestions and put them into practice so (PPP.fg.02, NHS Partner)
(iv) Fostering local collaborations that include practitioners and members of the public to address the social inequalities in health. Developing collaborations between different agencies and with members of the public has been argued to be an effective way to address social inequalities in health (CSDH, 2008). Certainly many CLAHRC-NWC staff and partners appreciated that ‘joint work between universities and the service side’ opened opportunities to access resources like databases, tools and ways of presenting information; deepened their understanding of health inequalities and encouraged them to use the collaboration to rethink how they address health inequalities. Several academics particularly valued the opportunity to work with local government and organisations outside the traditional remit of public health such as those in the fields of housing, environment, transport, as well as with third sector organisations, community groups, residents, local businesses and local employers to address local social determinants of health. This University Partner reflected on the impact of CLAHRC-NWC on fostering a culture of coproduction through collaboration with Local Authorities:
For example, places like (Local Authority name) they are trying to address debt, trying to bring in stuff like financial education type support. I think it has changed the dialogue and all the partners who have been involved I do detect that. (EKM.int.190118, Academic Partner)
(v) Valuing public involvement. In the field of gender mainstreaming another indicator of success is the involvement of women or women’s rights organisations in the planning or formulation of programmes and the valuing of their knowledge and contributions. (UN Development Group, 2018) By the same token, addressing health inequalities requires public involvement as an entry-point to understand the perspective of those experiencing social and health inequalities. A number of interviewees and comments on feedback forms revealed that the HIAT assessment process helped some people to comprehend the importance of involving members of the public to design and implement more effective interventions as this academic highlights:
Well I think that’s where public engagement and the HIAT actually mesh together in that you can’t really do a HIAT without engaging with people, members of the public or patients or carers, because you’re turning the research topic round to what do they think would be helpful to them (EKM.int.240118, Academic Partner)
Local authority respondents made similar points, when asked whether they had benefited from being involved in the CLAHRC:
Yeh I do very much so (...) I suppose some things I’ve learnt have been around, you know, when you’re working with communities actually trying to do something (PH.int.9, LA Partner)
We utilised May et al.’s Normalisation Process Theory (2021) to identify and explore factors associated with context and agency that enabled or impeded mainstreaming progress.
Contextual factors that influenced mainstreaming
According to the theory, as explained earlier, contextual factors influencing mainstreaming processes include capacity and potential. (May, 2013; May and Finch, 2009)
(i) Capacity. The previous section demonstrated how CLAHRC-NWC invested in developing structural and cognitive resources to facilitate the process of mainstreaming health equity. But despite these efforts, there were problems. Perhaps the most important problems emerged because of the lack of an explicit mainstreaming strategy. Given the lack of readily accessible literature, guidelines or examples on how to embed a focus on health equity at an institutional level or in research, and the short time available to produce the original funding bid, it is understandable that a strategy was not put in place initially. However, it is likely that this led to a lack of clarity about whose responsibility it was“to integrate and coordinate work (…) to reduce health inequalities” as set out in the original proposal. The importance of having a strategy that spells out “norms” or “rules” to give structure to meanings and define behaviours within organsations has been highlighted (May and Finch, 2009; Morison and Brown, 2007). Indeed, gender experts have noted that if mainstreaming is to be successful, organisations must make explicit its importance and deal with issues of responsibilities and roles: “[if gender] is not integrated from the outset of the process, it will structurally determine that…[it] does not receive necessary attention and priority throughout the remainder of the process”. (Ahmed et al., 2016: 535)
Insights from the literature suggest that if CLAHRC-NWC had had an explicit strategy on health equity mainstreaming from the onset, it is more likely that the collaboration would have established a central ‘team’ with a remit to foster responsibility for health equity mainstreaming across the CLAHRC, rather than locating this responsibility in the Public Health Theme. However, a senior university partner involved in writing the original bid argued that “responsibility was contained within a theme to ensure it could be delivered in a focused rather than diffuse way with the most senior experts in control of the process who also had responsibility for engagement”. From this perspective problems arose not because of where the health equity team were located in the organisation but because, in practice, staff deflected responsibility. Particularly in the early years, routine data suggest that the dedicated staff member working part time on the health inequalities agenda was perceived as having primary responsibility for training, promoting and monitoring the implementation of a health inequity focus. It is likely that this process would have been compounded by the lack of an explicit strategy, which allowed the message that health equity mainstreaming was a CLAHRC-NWC wide responsibility to be diluted.
Problems also arose because many of the first phase project proposals began before the HIAT was in place so a focus on health equity had to be ‘retro-fitted’: there was perhaps an understandable reluctance amongst some research staff to engage in this process with enthusiasm. Third, the HIAT team was on a steep learning curve in terms of how the health equity mainstreaming objectives could be operationalised. This led to delays in the development and provision of cognitive resources (i.e. such as training materials, guidelines, checklists or case studies). In addition, it took nearly a year to appoint a senior researcher to lead on co-developing the HIAT and a further seven months to launch the first version of the tool in March 2015. However, this process itself involved a significant number of people (PA, partner professionals, academics etc) in a series of iterative co-development and review meetings focused on the tool itself and related web resource. These meetings thrashed out many disagreements and concerns about definitions, emphasis on socio-economic factors and expectations enabling the developing of a more accessible and appropriate tool.
(ii) Potential. Potential is the “readiness” to act, embrace new knowledge or adopt a new practice which is, in turn, highly dependent on what people already know (cognition). Pedraza-Fariña’s study (2017:35) on social innovation within collaborations emphasised the impact of cognitive distance between people - ie the gulf between different ways of acquiring knowledge and understanding information - which “can prevent fruitful idea recombination” and collaboration. In essence, cognitive distance hampers people’s potential to engage with other ways of knowing, creating conflicting perceptions of what counts as evidence and what problems and approaches are worthy, rigorous and feasible. (Inhorn, 2006; Pedraza-Fariña, 2017: 418)
Though not explicitly referenced, forms of cognitive distance were one of the most frequently mentioned barriers to Partners’ staff engagement with CLAHRC-NWC’s approach to health equity during the first 18 months. For instance, while there was widespread agreement that health inequalities were important, there were disagreements over the centrality of the socio-economic drivers in CLAHRC-NWC’s approach to health equity and even, as this partner noted, disagreement about how prominent the health inequalities focus should be:
I don’t know but some very senior people have said ‘we would like you to tone it down next time because other people are complaining, saying, “bloody Health Inequalities it’s figuring all the time; I just want to answer a research problem; why have we got to worry about that? (APE.int.190118, Academic Partner).
There were also different understandings of the concept of inequity. This participant explained how professionals struggled to integrate CLAHRC-NWC’s focus on socio-economic drivers of health inequalities as opposed to a disease focus into their pre-existing projects and activities:
Part of the reason why I have struggled a bit trying to explain to them because people tend to think about like health, ‘well I’ve got cancer’ or ‘my friend or my family’s got cancer’ so it's a real physical or health problem or somebody’s got dementia or severe depression or whatever, but it’s all these sort of like precursor still a lot of these things I see (EKM.int.190118, Academic Partner)
Data from the interviews suggest that this resistence could also be driven by ideas about the limited benefit professionals would obtain from engaging with health inequalities, echoing research that suggests that cognitive distance is also shaped by professional self-interest (Sen et al., 2007). For instance, those reluctant to invest time to retrofit health inequalities in their existing projects claimed that HIAT assessments and progress reports were too ‘restrictive’, ‘bureaucratic’ or ‘unnecessary’.
Finally, people’s potential to act is dependent upon pre-existing relationships. (Leach et al., 2017; Pedraza-Fariña, 2017) CLAHRC-NWC brought together organisations and individuals from very diverse disciplines and backgrounds, most of whom had no previous connecting ties. This can have serious implications for the levels and extent of trust, which is an important requirement for cooperation (Delany-Crowe et al., 2019).
We bring a group of people together that have not worked together before and that was a major challenge. So you’ve got a lot of money to deliver something really quite big among a group of people that have no track record of working together before and that was a real stress (...) it really impacted on efficiency and the ability to deliver something for quite a long time’ (FW.int.090218, Academic Partner).
The success of one stream of work, the Partners Priority Programme (PPP), illustrates the importance of cognition and pre-existing relationships to activating people’s predisposition to engage with health equity. This programme was established in 2015, within the Knowledge Exchange Theme, to evaluate new models of care. Widely perceived to be very valuable, respondents comments suggest that a key ingredient in this was the programme lead’s commitment that enthused members of her team. With a background in Public Health she advocated for action on the social causes of health inequalities and ensured that addressing health inequalities was a cross-cutting goal in the programme. She was also an ‘in-betweener’. As an academic and local government practitioner she spoke two ‘languages’ so she understood and helped to bridge different epistemic worldviews. There were of course other dynamics at play, notably the fact that this programme was established at the request of NHS and Local Government Partners and had the SB’s approval. This was instrumental in legitimating and facilitating the lead’s attempts to make health equity a priority.
Emerging expressions of agency that influenced mainstreaming
Enabling what May et al. (2009) terms “emerging expressions of agency” is essential to normalise new ways of thinking and acting. These emerging expressions of agency involve capability, which requires that resources are “workable” so they can be easily integrated into existing routines and structures and contribution, which happens when individuals become active participants in mobilising resources to normalise practices.
(i) Capability. As argued earlier different understandings of health inequity played a role in determining whether people resisted or engaged with the health equity mainstreaming processes. But, sometimes it was a lack of confidence, and not a lack of desire and knowledge, that prevented people from designing health equity-sensitive activities and/or supporting others to do this. As CLAHRC-NWC developed more of its activities included training and developmental sessions on health inequalities. This resulted in a general perception that knowledge of, and confidence in, using the HIAT tool – making it more ‘workable’ – grew over time. As one respondent explained:
I think, when I was looking at it just as a tool without a project to apply it to (...) I mean I could understand the words that I was seeing on the page but I couldn’t imagine how it would be applied in actuality (...) so that whole process of look at the HIAT tool, apply it to a project, help them with the project and then get some feedback from (facilitator name) and then go around that again, that iterative process with (facilitator name’s) feedback I think has been a really important learning opportunity (PPP.fg.02, NHS Partner)
Once the HIAT tool was perceived to be workable it was easier for people to see how it could be integrated into everyday practice. One postgraduate student, for example, highlighted how, after receiving training, they planned to use the HIAT in the future. Another student noted that applying the HIAT helped them to recognise the responsibility of all researchers in applying a health equity lenses to health service research.
(ii) Contribution. Positive contribution leading to integration of new practices is not necessarily the sum of potential, capacity and capability. As already noted, for some people capacity building activities and the requirement for HIAT assessments and reports were not enough to bring about shifts in thinking, which in turn impacted on people’s readiness to engage with health equity and the HIAT. Knowledge, perceptions about professional gain, lack of time to re-align projects, lack of support within organisations, pressure to get on with the research and publish and the weight of the mind-set that ‘this is the way we do things’ were all factors that thwarted contribution: the mobilisation of resources to normalise practices.
On the other hand, there were many involved in CLAHRC-NWC who accepted that health equity mainstreaming was a CLAHRC-wide reponsibility. Their attitudes, combined with access to training and resources (structural and cognitive), helped them to become active supporters of practices that normalised a health equity focus into their own and their teams’ work. They showed a great attachment to CLAHRC-NWC’s approach and became HIAT champions, playing a fundamental role in creating an environment to motivate others to engage with issues of health inequalities. As one core CLAHRC-NWC staff commented, learning to implement the HIAT had been ‘fantastic’ not only because it enhanced her own knowledge and skills but because it could enthuse and support others to use the tool. Similarly, a Local Authority Partner commented on how their expanding understanding of health inequalities affected their approach to data analysis and collaborations:
a lot of the broader Health and Equality stuff has probably affected how I look at data in other parts of the county. For example I do quite a lot of work in (place name) working with one of the local GP’s and a team of partners and community members looking at how we tackle some of the entrenched issues there. So that side of it probably has stepped back in yes. (PH.int. 01, LA Partner)
Strengths and limitations of the CLAHRC evaluation
CLAHRC-NWC invested resources in cash and kind in conducting an internal evaluation and a wide range of stakeholders –professionals and public - contributed a valuable diversity of perspectives to the interpretative process. The fact that the evaluation was conducted by an internal team enabled its members to navigate the intricacies of this complex collaborative organisation and to draw upon embodied and tacit knowledge of the context in which CLAHRC-NWC operated. This helped to fill gaps in the data and enabled access to a range of secondary data.
At the same time, however, this ‘insider position’ can be viewed as a limitation. Several steps were taken to reduce “direct bias” (Harding, 1987) from CLAHRC-NWC staff conducting the evaluation. These included: avoiding allocating interviews to members of the evaluation team with personal contact with the interviewee; initial transcripts coded by two of the evaluation team researchers and results compared; and a collective, iterative process of reflecting on data analysis and interpretation. PAs also reviewed a sample of transcript extracts to ensure a public perspective of key themes informed the findings.
Finally, there were some differences in the data collected from the different components of the evaluation. As each component had its own objectives, the interview and focus group topic guides varied in the detail to which they prompted research participants about health inequalities. However, together they provided a rich picture across the collaboration’s work.
