MERH 2018: an inaugural, international meeting of minds

Activism workshop by Doctors of the World and DocsNotCops; [credit: Jessica Potter]

By Christy Braham

The first World Congress on Migration Ethnicity, Race and Health (MERH) – held from 17th to 19th May in Edinburgh – was an event met with anticipation amongst researchers and advocates in the field, aiming to ‘examine contemporary problems across the globe, debate solutions, and forecast the future’.  The conference presentations, posters, workshops and roundtables tackled a range of disease areas, the health consequences and challenges of social, environmental and demographic change, as well as theoretical, conceptual and technical developments with regards to improving public health for increasingly diverse populations.  With attendees hailing from over 50 countries in both the Global North and the Global South, I was indeed encouraged to see some commitment to diversity in the delegates list and conference organising committees, as well as in the scientific programme itself.

There was strong engagement from members of the Health Equity and Inclusion Group at MERH.  On the first day, Professor Sarah Salway and Lynne Carter gave back-to-back presentations focused on research methods in relation to minority ethnic groups, the utility and importance of ethnic categorisations as methodological tools for challenging health inequalities, and identifying the racialised – and often counterproductive – ways in which such categorisations are sometimes applied. On the topic of migration, Dr Hannah Fairbrother successfully presented a poster detailing the protocol and results of four regional systematic reviews of the health of migrant children around the world – a core part of the Hidden Voices  collaborative project.

Professor Sarah Salway giving a presentation on the use of ethnic categories in health research
Professor Sarah Salway giving a presentation on the use of ethnic categories in health research

The second day saw Dr Liz Such share much of her most recent work with delegates.  Having recently explored the issue of modern slavery in the UK under a public health lens in collaboration with Public Health England (Such et al., 2017), she gave an oral presentation of the outcomes of this project.  Additionally, a poster was presented of her co-designed tool for primary care practitioners – entitled ‘migrant.health’ – which was met with interest from other delegates engaged in similar work elsewhere in Europe.  Following a thoroughly enjoyable, vibrant, and exhausting evening of traditional Scottish entertainment at the MERH social dinner, Professor Sarah Salway then led a well-attended workshop on the third and final day of MERH which was focused on the role and application of the medical humanities in understanding and tackling ethnic and racial health inequalities.  As an attendee of the workshop myself, I found it to be a prime opportunity for self-reflection regarding my own journey as a health researcher – having come from a biomedical and epidemiological background yet now actively engaging in social science research for my doctoral research.  Frequently exploring the concept of epistemology  and considering different “ways of knowing” does highlight my own previous bias; I’m reminded of how I routinely favoured solving a scientific question exclusively within a biomedical paradigm without considering the sociological framing of the question itself.

Of the numerous areas of research, policy and practice I came across at MERH, it was particularly interesting to be able to further discuss cultural competence with those whose work centres on this concept.  Having held discussions with other delegates – one example being on interventions in North America which integrate linguistic adaptions into stroke care for Hispanic patients with aphasia – it became clear how care for culturally diverse and underserved groups is still sometimes limited to making adaptions to interventions, rather than pushing for organisational and system-wide change in how one delivers care for these groups (Center for Substance Abuse Treatment, 2014).  Health navigation – the topic of my doctoral research – has continually emerged as an intervention embodying many of the tenets of culturally competent and culturally safe care for minority ethnic and migrant populations, especially in comparison to other adaptions such as engaging with bilingual frontline health professionals or clinic translators (Natale-Pereira et al., 2011).  However, interestingly, it has still only had limited roll-out within the American health and social care system, and exists in somewhat isolated forms elsewhere across the world.

The MERH Congress’ very own Edinburgh Declaration was published during the course of the conference, outlining the shared views and motivations of delegates and organisers, as well as a set of policy recommendations for moving forward.  While the conference was indeed an inaugural, international meeting of minds and a fantastic opportunity to meet and engage with others in the field, it is hoped that such an event does not become an echo chamber.   There is an urgent need for us to not lose sight of the importance of engaging with other actors outside of academic circles and of the importance of always including and amplifying the voices of those groups who we research, work with and advocate for.

Activism workshop by Doctors of the World and DocsNotCops; [credit: Jessica Potter]
Activism workshop by Doctors of the World and DocsNotCops; [credit: Jessica Potter]

References

 Center for Substance Abuse Treatment (US). Improving Cultural Competence. Rockville, MD: Substance Abuse and Mental Health Services Administration (US); 2014. (Treatment Improvement Protocol (TIP) Series, No. 59.) 4, Pursuing Organizational Cultural Competence. Available from: https://www.ncbi.nlm.nih.gov/books/NBK248430/

Natale‐Pereira, A., Enard, K.R., Nevarez, L. and Jones, L.A., 2011. The role of patient navigators in eliminating health disparities. Cancer117(S15), pp.3541-3550. Available from: https://doi.org/10.1002/cncr.26264

Such, E., Laurent, C., Salway, S., 2017. Is Modern Slavery a Public Health Issue? Public Health England annual conference 2017. Available from: https://phe.multilearning.com/phe/2017/eposters/186620/liz.such.is.modern.slavery.a.public.health.issue.html


Creating Knowledge that is good enough – Lynne Carter and Susan Hampshaw

Creating Knowledge that is good enough – Lynne Carter and Susan Hampshaw

By Lynne Carter and Susan Hampshaw

Lynne is an equality and diversity manager in the NHS.  Her NIHR funded Knowledge Mobilisation Research Fellowship is about mobilising knowledge to reduce ethnic health inequalities.  This talk is about one of her fellowship case studies – work with Susan Hampshaw from the Public Health team at Doncaster Council.

The Evidence and Ethnicity in Commissioning research project found many barriers to mobilising knowledge about ethnicity, including that people advocating for change in this area often lack skills in finding and using evidence.  Doncaster Council’s decision to assess the health needs of local Black and Minority Ethnic (BME) people gave Lynne and Susan the opportunity to work together.

Over a few months and supported by Lynne, the public health team  had brought together evidence of health needs and formally presented this at the Health and Well Being Board.  At the board, we talked about this as an on-going piece of work with work plan and that a next step would be work on this project aiming to examine inequalities for people of different ethnicities using Improving Access to Psychological Therapies (IAPT).   IAPT is national health service providing counselling to people with depression and anxiety.

We knew this was an important issue for local people and we were keen to find a way of identifying, understanding and acting on evidence about uneven access to and outcomes from services. We felt that if we could develop a simple, methodical approach we could then roll this out to other aspects of health and wellbeing.

We know, that there’s an uneven playing field in this area.  The experiential knowledge brought by BME people is generally undervalued.  Policy makers lack knowledge about inequalities linked to ethnicity and lack confidence in how to effectively intervene.  It is important to find a way to mobilise this knowledge so that everyone involved can readily understand it.  People working in public health are often the gatekeepers of this data and the way they talk about it and present it can act as a barrier to its use.  We sought out a data specialist (Laurie Mott) who could help us avoid this trap and help us use the data as a starting point for conversations about what it might mean.

Lynne worked in Sheffield and Doncaster, back and forth, gradually developing a methodology to describe and compare for local women and men of different ethnicities the need for psychological therapy, usage of those services and outcomes for people who did you use them.

picking your mind

“My fellowship gave me the time and opportunities to pick the brains of professionals working in other fields. I learnt from researchers how to think more clearly about exactly what I wanted to know and from data analysts like Laurie, how to calculate statistical significance.”We held a workshop with local people, community organisations and staff working in the IAPT teams.   Ellie from Leeds GATE , a local Third Sector organisation, facilitated, using their roads, bridges and tunnels model to explore the community assets of local people and barriers to accessing services.

We did this as a piece of co-production work, aiming to create a level playing field where everyone’s knowledge is equally valued.  We worked on the premise that no one party has the knowledge to improve this situation.

We’re well on the way to developing a methodology to create knowledge that is “good enough” – more robust and accurate that the results of Google searches that equality and diversity practitioners often resort to; also a method that doesn’t need experienced researchers, qualified data analysts or three years’ worth of work.

We’ve brought together different types of knowledge, shared and developed skills. We’ve spanned team boundaries to do both parts of Ian Graham’s Knowledge to Action model – we’ve created knowledge as depicted in his funnel and we’re currently following his implementation cycle.  We’re making connections with a view to sharing our learning and methodology across the NHS and Public Health systems.

So, in short this was a project this was a project about transformation! We aimed to transform the data we had on mental health, ethnicity and gender and turn it into usable knowledge that we could act upon.

transformation


Reflections on HARP: health navigation as an enabler of healthcare access

HARP Impact cake 3,598 journeys

by Christy Braham

In mid-December 2017, academic colleagues, civil society representatives, health and social care professionals, activists and members of the refugee and asylum-seeking community convened at Leeds’ Thackray Medical Museum for a conference on HARP (Health Access for Refugees Programme), organised by the Refugee Council.  This conference served as a celebration of HARP – amid impending termination of its funding from the Department of Health – and an opportunity to disseminate good practice, as well as foster continued awareness of the barriers to accessing healthcare currently faced by refugees and asylum-seekers in the UK.  Given its direct relevance to my own doctoral research on health navigation, I jumped at the chance of attending the conference in order to learn more about HARP and its on-the-ground impact.

HARP sought to increase access to healthcare for refugees and asylum-seekers in six locations across Yorkshire and the North East (Sheffield, Wakefield, Doncaster, Hull, Leeds and Middlesborough) over a three-year period.  As well as education for frontline healthcare professionals on the health needs of these communities, a core element of HARP has also been the training and deployment of volunteer ‘befrienders’ who act as a bridge between refugee and asylum-seeking populations and health and social care service providers; these befrienders provide English language support, advice, accompaniment to health appointments and community advocacy.  As I had expected, the majority of these befrienders are actually refugees and asylum-seekers themselves; their peer experiences uniquely positioning them to share knowledge of the NHS system with other refugees and asylum-seekers, so that they can be empowered to recognise their individual entitlements to accessing timely and appropriate care.  In this way, the framework embedded within HARP is inherently rights-based.

The utilisation of voluntary befrienders to increase access to healthcare for refugees and asylum-seekers is rooted in the concept of health navigation for underserved groups, with the earliest example of its implementation being a 1990 programme designed to enhance African-American women’s access to breast cancer treatment in Harlem, USA (The Change Foundation, 2013).   Health navigators – including HARP’s befrienders – generally function as lay co-ordinators of care for underserved populations and provide a link between service providers and the communities themselves, through offering culturally-sensitive information and support.  In this way, they can help to overcome barriers to access by directing individuals towards care who may otherwise have been neglected, advocating for the needs of marginalised populations, supporting and strengthening health screening and referral services, facilitating health promotion and cultivating a sense of trust through patient engagement (Natale-Pereira et al., 2011).  There is growing evidence of the positive effects of health navigators, for example, improving chronic disease outcomes for migrants and ethnic minority populations (Shommu et al., 2016).My doctoral research will explore health navigation for refugees and asylum-seekers in UK and Europe in greater depth.

A particularly potent element of the conference discussions centred on the impact of new legislation on NHS charging for vulnerable refugees and asylum seekers, especially as it pertains to refused asylum-seekers.  Since October 2017, NHS hospitals in England have been legally required to check the eligibility of all patients to receive free NHS care, levy upfront charges to those who cannot prove their eligibility and withhold ‘non-urgent’ treatment from those who cannot pay.  Refused asylum-seekers who are not in receipt of governmental support are a particularly vulnerable migrant population who would, under these new regulations, be liable to pay for all ‘non-urgent’ treatment, ultimately placing them at risk of further social exclusion.  After all, few would need a reminder of the crucial importance of accessing timely preventative care and how the imposition of charging systems can force particularly vulnerable migrants to delay their treatment-seeking.  Refugee and asylum-seeking women have been found to make up 12% of all maternal deaths in the UK, despite representing a mere 0.3% of the population (Lewis, 2007).

HARP was deemed a success in terms of social impact; as can be seen by the (admittedly delicious) conference cake in the above picture, 3598 refugees and asylum-seekers improved their understanding of how to access healthcare services, through the training of 216 befrienders.  It was also reported that, following engagement with befrienders, 93% of refugees and asylum-seekers registered with a GP and 75% reported improved health and wellbeing.  The future of HARP is, however, currently uncertain due to the need to source vital funding to enable its continuation.  As one of the befrienders noted in his speech at the conference – solidarity is vital to uplifting the community.  HARP – and other programmes like it – cultivate solidarity with (and within) refugee and asylum-seeking communities who have been the focal point of highly politicised public discourse on ‘entitlement’ to service provision against a backdrop of economic austerity.  HARP promotes an effective form of empowerment anchored by shared challenges and peer experiences and, in my view, the relaunch of HARP would in every sense be the icing on the cake.

References

Foundation TC. Health System Navigators: Band-Aid or Cure? Toronto: The Change Foundation; 2013.

Lewis GH. Saving Mothers’ Lives: reviewing maternal deaths to make motherhood safer: 2006–08. The Eighth Report on Confidential Enquiries into Maternal Deaths in the United Kingdom. BJOG: an International Journal of Obstetrics and Gynaecology. 2011;118(Suppl. 1).

Natale‐Pereira A, Enard KR, Nevarez L, Jones LA. The role of patient navigators in eliminating health disparities. Cancer. 2011 Aug 1;117(S15):3541-50.

Shommu NS, Ahmed S, Rumana N, Barron GR, McBrien KA, Turin TC. What is the scope of improving immigrant and ethnic minority healthcare using community navigators: A systematic scoping review. International journal for equity in health. 2016 Dec;15(1):6.


PhD Opportunity UoS REF Collaborative Award – Deadline 30 April 2018

Race Equality Foundationlogo
We are delighted to invite applications for an ESRC-funded collaborative PhD studentship working closely with the Race Equality Foundation.
Giving voice to children in family-centred work: co-producing an evaluation framework for the Strengthening Families Strengthening Communities Programme
Deadline April 30th 2018.
For more details view the following document (PDF):  PhD Opportunity UoS REF collaborative award

Are we making progress on researching ethnicity and health?

Reflections from the Society for Social Medicine annual meeting, September 2017, University of Manchester, UK.

Sarah Salway (University of Sheffield) and Lois Orton (University of Liverpool)

There was a lot to like about the SSM annual get together in Manchester this year – friendly staff at the registration desk, good cakes, energetic after-dinner entertainment, a varied programme and some lively debate, particularly triggered by the excellent keynote talks. And, for those of us with a strong interest in ethnicity and health, two full streams of papers devoted to this area.

A glance at the abstracts for these paper sessions also suggested some positive signs. For instance, there was evidence of new, longitudinal datasets with sample sizes sufficient to sustain analysis by ethnic group, such as the Olympic Regeneration in East London (ORIEL) study.1  We also saw examples of useful data linkage and a variety of methodologies being applied, including review methods and detailed qualitative work alongside the secondary analysis of quantitative data. But, despite these good things, as the sessions unfolded, it became clear that there are some important concerns about research in the field of ethnicity and health that remain stubbornly persistent.

First was the failure to engage with ethnicity as a multidimensional biosocial construct. By-and-large presentations either failed completely to articulate how ethnicity was being theorised or adopted narrow, deterministic conceptualisations.  In one presentation, ethnicity was explicitly equated with ‘cultural norms’ and the potential roles of racial discrimination and structural disadvantage were dismissed by the presenter when suggested by an audience member as important dimensions to consider. In other presentations, there was the implicit message that socially defined ethnic categories can be used as reliable markers of bio-genetic difference.

This lack of explicit conceptualisation was also reflected in the statistical modelling on show.  Ethnic categories were employed in a taken-for-granted way as if they were natural and uncontested, and a variety of variables were introduced into models with no or very limited articulation of the hypothesised relationships being tested.  Indeed, in a couple of presentations all the variables seemed to be termed ‘confounders’, while several were indisputably on the causal pathway between ‘exposure’ (ethnic group) and outcome.  When associations were found, rather than researchers recognising these as predictive relationships that warranted further investigation, they appeared to conclude or imply causal relationships, with un-deconstructed ‘ethnicity’ being the culprit. These shortcomings reflect a tendency towards ‘categorical thinking’, with papers being primarily descriptive. Analyses stopped well short of any meaningful attempts to ‘unpack’ the complex and interplaying social and political processes behind the observed statistical associations, to either develop or test theory. In Katikareddi and Valles’ words rather than acknowledging ethnic categories as proxy variables they were deployed as “routine stand-ins for complex or poorly understood causal forces; their epistemic weaknesses are forgotten and they are taken at face value instead of as representatives of something else.”2

Critiques of health-related research that unhelpfully views ethnic identities as fixed and homogenous characteristics of people, rather than emergent properties of socio-ecological systems, have a long history. Furthermore, such approaches have often been implicated in the marginalisation and ‘othering’ of minority populations by reinforcing cultural stereotypes while overlooking the intricate social, cultural, and institutional factors that all too often create the vulnerability that they face.3 And, these critiques do not just come from the likes of sociologists and anthropologists. Indeed, prominent social epidemiologists – including Jay Kaufman and Nancy Krieger – have made important contributions to encouraging more carefully theorised quantitative work in this area.4,5 Closer to home, SSM’s very own Peter Tennant and George Ellison at University of Leeds are exploring the use of Directed Acyclic Graphs (DAGs)6 as a route to more judicious statistical modelling in this and other complex areas.7 It was a shame that neither of them could be present to contribute to the sessions we refer to.

Linked to the above, there was a noticeable lack of consideration of the consequences of the research evidence being generated – what were the potential implications of the questions posed and the answers generated? Several papers concluded by suggesting the need for ‘targeting’ of interventions at particular ethnic ‘groups’. In one presentation clinical colleagues appeared to be delighted at the idea that they might be provided with ethnic-specific cut-offs for children’s BMI to apply in practice. There was consideration neither of how this might be operationalised in practice nor the possible negative effects of such ethnic-specific action.  Earlier work has highlighted the need to consider in detail the pros and cons of delivering bespoke/specialist versus mainstream service responses to the health needs of minority ethnic people. At the level of selective individual treatment or care, the dangers of practitioner-led approaches to determining ethnic identity have been highighted8 and the controversy around BiDil – the first drug to be approved by the American Food and Drugs Administration for use in black African Americans alone – rages on.9 More generally, researchers working in the area of ethnicity, health and wellbeing must be alert to the dangers of their research framing inadvertently contributing to stigmatisation and pathologisation. The ways in which findings might be (mis)represented and mobilised, and for whose benefit, must also be given careful thought. Earlier work has highlighted the importance of researchers carefully interrogate their use of ethnic/racial categories and suggested the need to consider withholding findings in some situations where the potential risks of collective harm outweigh the benefits of the knowledge.10,11

Finally, and perhaps most importantly, there was no sign in any of the presentations of any active involvement of community members or grassroots organisations.  Admittedly, the 15 minute presentations may have skated over engagement work that did, in practice, take place. But the failure to mention any such activity speaks volumes for the low importance that is currently given to this element of study design and execution. The importance of active engagement of black and minority ethnic people in research that addresses their health and wellbeing has been emphasised before.12  We appreciate that researchers can often struggle to put in place the mechanisms required to achieve meaningful engagement within budget constraints. Funders must recognise and provide the resources needed to facilitate the involvement of people from diverse ethnic backgrounds in research studies, for instance to allow the time and interaction to develop trust and to enable multilingual working where necessary.

Our rather negative assessment of the state of play at SSM 2017 begs the questions: Is this typical of current UK research on ethnicity and health? And, if not, what can be done to share better practice? As already noted above, there are good examples to be found and promising developments on a number of fronts. Guidelines produced in 2013 are a helpful starting point,11 as are texts that set out principles for sound research practice.13 However, as suggested above, repeated calls for greater attention to the rigour of research in this area highlight the fact that research on ethnicity and health is conceptually and methodologically challenging. Rather than simply crunching the numbers and reproducing the categories, we need to be engaging in much more careful theoretical framing. Drawing on tools and approaches from outside our health-focused research homes is likely to improve practice.  Katikareddi and Valles set a good example when they suggest that social epidemiologists could usefully engage with philosopher Nancy Tuana’s notion of “coupled ethical–epistemic issues” as a way to make progress on the conceptual and practical challenges of working with complex socially constructed variables, including ethnicity.2 Similarly, Krieger has challenged social epidemiologists to “expand and deepen their theorizing about who and what makes populations and their means.”14 We suggest that the concept of intersectionality could be more routinely employed to help bring closer attention to the complexity of individual and collective identity, social roles and the broader social and political contexts in which they exist, as demonstrated in recent work.15  In terms of the need to embed the involvement of patients and the public within research on ethnicity and health, INVOLVE’s diversity and inclusion working group is currently in the process of developing standards and tools to both challenge and support health researchers to do this work better. Wellcome is also embarking on a new programme of work to put equality and inclusion at the centre of what they do. We must hope that these initiatives can also influence other parts of the health research system so that inclusive practice becomes ‘business as usual’.

So, while it was exciting to see that UK health inequalities researchers are turning their attention to ethnicity, we urge much greater engagement with the theoretical, ethical and methodological complexities that arise in this area of work. Without this, there is a very real danger that the research undertaken will do more harm than good.

 

References

  1. Berger N, Lewis DJ, Njagi EN et al. (2017). Neighbourhood social cohesion, ethnicity and physical activity in adolescents: longitudinal evidence from the ORIEL study. Paper presented at the Society for Social Medicine Annual Scientific Meeting, September 6-9th 2017, Manchester.
  2. Katikireddi SV and Valles SA (2015). Coupled Ethical–Epistemic Analysis of Public Health Research and Practice: Categorizing Variables to Improve Population Health and Equity. American Journal of Public Health105 (1): e36-e42.
  3. Ahmad WIU (ed.) (1993). ` Race’ and Health in Contemporary Britain. Buckingham: Open University Press.
  4. Kaufman JS (2008). Epidemiologic analysis of racial/ethnic disparities: Some fundamental issues and a cautionary example. Social Science and Medicine,66(8): 1659-69.
  5. Krieger N (2000). Refiguring “Race”: Epidemiology, Racialised Biology and Biological Expressions of Race Relations. International Journal of Health Services 30(1): 211—16
  6. Fleischer NL and Diez Roux AV (2008). Using directed acyclic graphs to guide analyses of neighbourhood health effects: an introduction. Journal of Epidemiology and Community Health. 62:842-846.
  7. Tennant PWG, Textor J, Gilthorpe MS et al. (2017). DAGITTY and Directed Acyclic Graphs in observational research: a critical review. Paper presented at the Society for Social Medicine Annual Scientific Meeting, September 6-9th 2017, Manchester.
  8. Aspinall P and Chinouya M (2011).Determining the identity of ‘black Africans’ in UK population and health policy contexts: ethical issues and challenges. Social Identities [Online] 17:255-270.
  9. Ellison GTH, Kaufman JS, Head RF, et al. (2008). Flaws in the US Food and Drug Administration’s rationale for supporting the development and approval of BiDil as a treatment for heart failure only in black patients. Journal of Law and Medical Ethics. 36 (3):449-457.
  10. Salway S, Allmark P, Barley R et al. (2009). Social research for a multiethnic population: do the research ethics and standards guidelines of UK Learned Societies address this challenge? Twenty-First Century Society  4(1).
  11. Council for International Organizations of Medical Sciences (2009). International ethical guidelines for epidemiological studies. Geneva. Switzerland: World Health Organisation.
  12. Mir G, Salway S, Kai J et al.. (2013). Principles for research on ethnicity and health: the Leeds Consensus Statement. The European Journal of Public Health23(3), 504–510.
  13. Nazroo JY (2006). Health and social research in multi-ethnic societies. Taylor Francis: London.
  14. Krieger N (2012). Who and what is a “population”? Historical debates, current controversies, and implications for understanding “population health” and rectifying health inequities. Milbank Quarterly 90:634-681.
  15. Koehn S, Neysmith S, Kobayashi K et al. (2013) Revealing the shape of knowledge using an intersectionality lens: results of a scoping review on the health and health care of ethnocultural minority older adults. Ageing and Society, 33: 437-464.

 

 


The Rise of Co-Production: Benefits, Opportunities and Challenges

By Sara Hodgkinson, Melanie Rimmer and Sarah Salway

In the context of healthcare, new concepts and buzzwords periodically appear, each carrying with them the promise of innovation and progress. The emergence of ‘co-production’ might initially have appeared to be just another trending catchphrase, yet the term appears to have established some credibility within the public health realm. Co-production refers to a collaborative process where healthcare providers work with healthcare users to shape health services with the intention of better tailoring them to need. This approach contrasts with the more typical ways of designing and delivering services where important decisions are made solely by those in positions of power.

The idea behind co-production is that by engaging service users in the design and creation of services, this will achieve better outcomes. But co-production isn’t just for service provision – it can also be used to make research more relevant by incorporating the views and ideas of local people in designing and carrying out projects (Durose et al., 2011). Because co-production can potentially include and involve groups of people that are easily excluded from research, it has been of particular interest to health equity researchers.

Several of our recent projects have used co-production. For example, one study aimed to develop health education materials on the topic of genetic risk associated with close relative marriage. We worked closely with members of the community to understand how they saw the issue, and used these insights to develop a print leaflet and an informational video that were then tested. The team trained and employed local people as co-researchers to engage and involve local people who might otherwise have been missed. Community researchers generated useful insights that helped to shape materials that were relevant and sensitive to local needs. However, the project also had challenges. In particular, not everyone in the community agreed with each other, and the community researchers sometimes found it difficult to navigate the range of perspectives held by different people, demonstrating one of several possible pitfalls of co-production. Co-production ‘blurs the lines’ between the professional and lay divide (Owens and Cribb, 2012: 268), but it is important not to place responsibility for the production of new knowledge in the hands of lay people alone. The value of collaboration should not be discounted, but it can be a challenge for co-production to separate the helpful information from that which is simply available. In other words, whilst all lay knowledge is valuable in its own right, not all will be usable.

It has been argued that co-production has the potential to reduce inequalities by giving a voice to service users whose views and needs are frequently overlooked. As an example, one of our recent projects – ‘WiLD: Weight Loss for people with Learning Disabilities’ – used co-production to explore how the Slimming World weight loss programme might be adjusted for people with learning disabilities. Insights and ideas from people with learning disabilities and Slimming World group leaders were used to make reasonable adjustments which were then tested in a small feasibility study. The team then made recommendations to Slimming World for further adjustments. Co-production was central to the design of the study and fundamental to its overall success. However, involving people with learning disabilities in the research required additional resource and time, and also necessitated various modifications to standard research methods, such as consent procedures. Researchers embarking on co-production projects without adequate awareness and preparation will at the least find the process frustrating and worse still may stray into unethical practice and inefficient use of resources (Salway et al., 2015).

Despite testimonies to the value of co-production, there is still some scepticism and a lack of consensus about what constitutes co-production and how it might best be achieved. The Social Care Institute for Excellence (SCIE) states that “there is no single formula for co-production” (2013), and this is echoed by others who highlight the “elasticity” of co-production as a term, and the broad scope of what the term might be used to mean (Needham et al, 2014: 3). The term “co-production” can be used to describe such varied methods as: professional and peer support networks for knowledge sharing; reciprocal relationships between service providers and users; and the personal development of individuals through positive use of lay knowledge and capabilities. Without clear definitions and descriptions it can be difficult to ensure that co-production methods are utilised most appropriately and effectively in research or policy making.

So what does the future hold for co-production? Will we see an upsurge in the use of co-production as researchers and policy makers recognise its worth and seek to improve the relevance of their work? Or will the ambiguity and challenges put people off from using these methods? It is clear that – when employed thoughtfully – co-production has the potential to revolutionise particular forms of research and service design. However, to ensure co-production delivers benefits to those who have previously been catered to least, there is clearly a need for significant new skills, resources and commitment to a different way of working.

References

Croot, L., Rimmer, M., Dowse, E., Harris, J., Hatton, C., Hillier, S., Lavin, J., O’Cathain, A. and Salway, S. (2016) ‘Modifying mainstream weight management interventions for use with people with intellectual disabilities: a user centred approach’, Obesity Facts 2016; 9 (suppl 1): 1-368 available at http://wild.group.shef.ac.uk/poster.html

Durose, C., Beebeejaun, Y., Rees, J., Richardson, J. and Richardson, L. (2011) Towards Co-production in research with communities, Swindon: AHRC

Needham, C., Durose, C., Mangan, C. and Rees, J. (2014) Evaluating co-production: pragmatic approaches to building the evidence base. For Co-production Panel, Political Studies Association Conference, 14-16 April 2014, Manchester, UK. Birmingham: University of Birmingham

Owens, J. and Cribb, A. (2012) ‘Conflict in Medical Co-Production: Can a Stratified Conception of Health Help?’ Health Care Analysis, 20 (3): 268-280

Salway S., Chowbey, P., Such, E, and Ferguson, B. (2015) ‘Researching health inequalities with community researchers: practical, methodological and ethical challenges of an ‘inclusive’ research approach’, Research Involvement and Engagement, 1 (9) available at http://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-015-0009-4

SCIE (2013) What is co-production – Defining co-production. [online] Available at: http://www.scie.org.uk/publications/guides/guide51/what-is-coproduction/defining-coproduction.asp [Accessed 16 Aug 2016]


Why is progress on race equality so slow in the UK?

Why is progress on race equality so slow in the UK? 

By Sara Hodgkinson & Sarah Salway

A new report from the Equality and Human Rights Commission highlights widespread racial inequality and warns that failure to tackle this deep-rooted disadvantage will exacerbate societal divisions. EHRC Chair, David Isaac, noted that the report exposes a ‘very worrying combination’ of a post-Brexit rise in hate crime and long-term systemic unfairness and race inequality.

Along with ethnic inequalities in employment, education, criminal justice and living standards, the EHRC report also highlights health and healthcare inequalities. The report confirms that, despite an apparently strong legal and policy framework, barriers to high quality healthcare persist for people of minority ethnic identity.  This apparent inconsistency between national policy and local reality was the motivation for our recent research project that looked into the role of healthcare commissioning organisations in delivering equal access to health services for minority ethnic groups in England.  We wanted to find out why progress towards race equality is so slow in the UK.

Healthcare commissioning is the process of planning, procuring and monitoring health services to effectively meet the health needs of the population. Between 2010 and 2013, we carried out a large-scale study to examine healthcare commissioning in England which was, at that time, predominantly carried out by Primary Care Trusts. The study included case studies, stakeholder workshops, and interviews with professionals.  We spent a large amount of time talking to people as they went about their jobs, observing the work of the organisations and reviewing the documents produced.  We wanted to find out whether and how ethnic diversity and inequality is considered within health commissioning in the UK.

We found that minimal attention was being given to ethnic diversity and inequality within healthcare commissioning.  Three key themes emerged from the research, suggesting why this might be.  First, minority ethnic health inequality is not a high policy concern.  Despite racial inequality in England remaining a hot topic both within the media and in academia, there appears to be a lack of discussion and action at policy level to effectively address the matter.  Few national resources include any consideration of ethnic diversity or equal access to services for minority groups and there is no performance monitoring related to this agenda.  Marginalisation of minority ethnic health was found to be consistent at national and regional level and, while some areas of good practice were identified at local level, the work tended to be piece-meal and without broader impact.

Second, we found widespread uncertainty among policy makers as to whether inequality is even really an issue.  Some senior leaders were unconvinced of the existence of inequalities between ethnic groups, despite a growing body of evidence to the contrary, others did not view such inequalities as a priority.  Without acknowledgement of the issue and its importance, ethnic inequalities in healthcare will continue to be overlooked at all levels.

Finally, interviews and case studies pointed to a lack of clarity at policy level as to how ethnic diversity and inequality should be addressed within the national health system.  Limited data on patterns of ethnic health inequalities, together with a lack of understanding of the subject among senior leaders and the tendency of some managers to blame minority groups themselves for poor access to services, were also important barriers.  Minimal understanding – both of the issue and of how to address it – undermines people’s confidence to act, resulting in the problem being downplayed and overlooked.

Our study primarily highlights obstacles to ethnic equality in healthcare in England, though we did find some factors promoting positive work.  Importantly, we found that action on ethnic diversity and inequality was rarely prompted by national directives but was rather driven by committed individuals who championed the issue locally.  Such individuals did, however, struggle to maintain momentum without clear leadership on the issue from local managers or central government.  Good work remained siloed and was often short-lived.

How, then, can equality in healthcare access be improved?  Our study suggests the need to enhance the skills, confidence and competence of individual managers and commissioning teams and to improve organizational structures and processes that support attention to ethnic inequality. However, it is also clear that greater political will and clearer national direction is required to produce the widespread system change needed. Our conclusions therefore mirror those of the recent EHRC report which calls for a ‘comprehensive race equality strategy’ that goes beyond the current ‘patchwork of initiatives’, is underpinned by good data, and monitors progress against clear targets.

The full report of our study can be found here and our recent paper in Social Science & Medicine can be found here.


Communities in Control

Big Local

What are the aims of this project?
This study aims to evaluate a Lottery-funded initiative – the Big Local – that aims to give residents in disadvantaged neighbourhoods a bigger say over what happens and how resources are used to improve their local area.  Big Local is run by Local Trust and is taking place in 150 communities across England over the next 15 years.

Why is this important?
Past research suggests that low control may be a fundamental cause of inequalities in health. However, we know little about how to support greater control, particularly at the level of communities. We also need to know more about how and why control impacts on health and its social determinants. The Big Local presents a great opportunity to learn more about effective ways to support greater control by communities.

How will the research be carried out?

There will be two phases. Phase one involves:

  1. Detailed case studies across 10 Big Local sites and analysis of quantitative data to describe the neighbourhood contexts and early experiences in different places.
  2. Interviews and document analysis at national level to describe how the Big Local intervention is expected to work.
  3. Design of methods to evaluate the impact of Big Local on health and wellbeing in the longer term (Phase two).

 Timeframe: January 2014-March 2017

Professor Jennie Popay of Lancaster University leads our team of researchers from LiLaC,  Cambridge, Exeter, London School of Hygiene and Tropical Medicine, FUSE and Sheffield.  Here in SPHR@Sheffield we are currently conducting case studies in two Big Local sites in Yorkshire.

How are stakeholders being engaged?
In case study sites residents are consulted on the conduct of the study and in some areas Community Researchers are directly engaged. Local advisory groups provide critical commentary and findings will be shared widely as they emerge. Local Trust guides and supports the work.

What will be the outputs from the study?
Resources for public health practitioners and local neighbourhoods will be produced, focusing on:

  • The links between collective control and health inequalities;
  • Factors influencing public health actions in low income neighbourhoods;
  • Lessons about community engagement/empowerment;
  • Small area monitoring systems;

Presentations and papers from the project will be listed here.

Find out more here