A long presentation given at the LILAC conference 25th-27th March 2024 in Leeds. The presentation reports on a Knowledge Exchange project that took place in summer 2023 to co-produce research priorities for health information literacy with members of the Somali, Yemeni and Roma communities in Sheffield

1. Health information literacy in
marginalised communities

2. Presentation structure
• Background to the project
• Literature review
• Knowledge Exchange & co-
production
• Findings from Roma workshops
• Findings from Yemeni workshops
• Findings from Somali workshops
• Health information literacy in
these communities
• Priorities for future research

3. Dr Pam McKinney Dr Laura Sbaffi Anna Robinson
Professor Peter Bath Dr Andrew Cox Meg Wiltshire
The
Information
School team

4. Definitions of Health Information Literacy
● Information literacy (health literacy) helps make informed choices relating to the health and well-
being of individuals and their families.
● This implies using credible and reputable healthcare sources when looking for treatment and
prognosis.
● To be an active partner in their healthcare, patients benefit from information literacy, allowing
them to engage in an informed dialogue with healthcare professionals. (CILIP 2018)
● Functional health literacy: basic abilities to find and understand health information;
● Interactive health literacy: more advanced abilities to engage with a wide variety of health
information and be involved in decision-making about care
● critical health literacy: the ability to critically analyse health information and apply it across the life
course. Nutbeam et al. (2018)
● We adopt a sociocultural perspective to health information literacy that acknowledges the
complexity of how people engage with health information (Hicks 2022)

5. Health literacy and health inequality
• Health inequalities are avoidable, unfair and systematic differences in health
between different groups of people (NHS 2022)
• There is an 8-year difference in life expectancy in wealthy and poor areas of
Sheffield (Hylton 2022)
• A close link between low health literacy and health inequality (Roberts 2015)
• low HL is associated with poor health outcomes, less use of preventative
services and greater use of emergency services, the adoption of risky health
behaviours, higher rates of chronic disease and higher health system costs and
is particularly associated with underserved communities (Stormacq 2020)
• Improving Health literacy through sensitive culturally appropriate, community-
focused interventions is seen to be a key method for addressing health
inequalities, particularly in ethnic minority communities (Stormacq 2020)
• NHS information services often do not reach marginalised groups because of
barriers such as language and digital skills (Buchanan & Nicol 2019)

6. What is co-production and why is it
important?
• Involving a greater range of people in health research is seen
to be a key mechanism for increasing impact of research
• Co-production makes research more equal by sharing power
between communities and researchers
• Co-production requires researchers to build trusting
relationships with communities
• Co-production should build capacity for research in
communities
• Co-production should enable communities to define the
benefits they get from the research, and how the results
should be shared
Tembo et al. 2021

7. Health Literacy
co-production and
participatory
methods
• Co-production is founded on the principle that service users and citizens
are experts in their own circumstances (Ali et al. 2018)
• Co-production seen to be vital for engaging ethnic minorities in health
research (Hylton 2022; Mitchell et al 2023)
• Community-based interventions have been shown to be effective in
supporting health literacy development (de Wit 2018)
• Example – co-producing health information about consanguineous
marriage and genetic defects (Ali et al. 2018)

8. What is Knowledge Exchange and why is it important?
• A process of building two-way
relationships with non-academic
partners from the public,
private, and third sectors, and
the community.
• A way to gain insights from
beyond the university
• Enrich research and teaching
• Creative, collaborative and
mutually beneficial
• Lead to impact from our
research

9. Background to the Knowledge Exchange project
• The Healthy Lifespan Institute connected us with health
practitioners who were interested in Health Literacy research
• Dr Nicola Jay, Consultant Pediatrician Respiratory and Allergy,
clinical lead for South Yorkshire CYP alliance
• Dr Louise Millington GP Partner & Trainer, Pitsmoor Surgery,
Deep End Yorkshire & Humber member and Deep End CRN
Practice Lead
• The Deep End Network works to address health inequalities in
Sheffield with a “practitioner - patient–researcher partnership”
Mitchell et al. (2023)
• GP funding does not adequately cover the needs of deprived
and ethnic minority communities in the city (Hylton 2022)
• We jointly prepared a bid for QR Knowledge Exchange funding

10. The Roma Community
• The Roma community are poorly understood and one of the
most marginalised communities in the UK
• Many Roma have led traumatic lives and have experienced
racism and discrimination
• Low literacy levels and mistrust of authority exacerbate
inequality
• The official figure of 3000 Roma in Sheffield is probably a
drastic underestimate
• The majority of Slovak Roma in Sheffield come from just two
towns in Slovakia
• Co-production with Roma identified as a way to develop
much-needed trust with the community
(NHS Race and Health Observatory 2023)
Thanks to Terezia Rostas for sharing
information about the Roma Community

11. The Yemeni Community
• The Yemeni community was established in Sheffield in the 1940s and 50s –
primarily in the steel industry
• The Yemenis of Sheffield established the Yemeni Worker’s union in the late 1960s
which later in the 80s became the Yemeni Community Association and is now
called ACT.
• There are now around 8000 members of the Yemeni community
• ACT offer a range of activities and resources including language classes, cultural
events, religious services, health services, social café, food pharmacy and social
support networks.
• ACT plays a vital role in fostering a sense of belonging and connection among
community members, as well as promoting understanding and integration
• ACT serves 1200 clients on a weekly basis and focuses on the well-being and
empowerment of these clients in Sheffield

12. The Somali
community
• ISRAAC means “Unity” in Somali
• Somalis started coming to Sheffield in 1940s-60s to work in
the Steel industry, and another wave of immigration in 1990s
due to civil war
• The ISRAAC Centre was established in 1987 and houses
offices, meeting rooms, an IT room and a large hall used for
Conferences, Workshops, weddings and events
• Support services include :debt advice, advice; FGM,
grooming, domestic abuse, support; sewing classes, IT and
ESOL classes Health and well-being, youth clubs and holiday
clubs
• Diaspora Multimedia Hub & studio

13. Co-production workshops
• Targeting the Roma, Somali and Yemeni communities
living in the area surrounding the Pitsmoor practice
Co-production workshops aim to:
• Develop relationships with community members and
understand their particular situation, and their priorities
• Co-produce funding applications for future research into
health information literacy
• Ensure the community is involved in the design and
implementation of research
• Provide evidence of Patient and Public Involvement for
future funding
• Workshop 1: trusted health information sources and
barriers to getting health information
• Workshop 2: Focus on future research priorities,
involving the community and generating impact

14. Design of workshop activities
• Desire to include interactive and creative ways to
engage with health information and generate discussion
and debate
• Majority of participants did not have a good level of
English
• Our community partners provided translation (e.g. of
ethics documents) and live interpreting
• Workshop food was an important aspect of developing
relationships
• Workshops were audio recorded following ethical
consent

15. Co-production
workshops with the
Roma community
• Workshop 1: Jade from Oasis
community hub helped us recruit
12 Roma community members for
the workshop (10 women, 2 men)
• Terezia from “Care for our Young
People’s future” provided
interpreting services, and valuable
cultural awareness training
• Workshop 2 took place @ Firvale
community hub
• 6 Roma community members took
part (5 women, 1 man)

16. Trusted information sources
• Family, friends and neighbours are the top sources of
health information
• People experienced in the UK systems are valued by the
community to aid in navigating NHS services
• The community centre is a trusted source of health
information
• People like Google because they can search in their own
language, but some doubts about the quality of
information on Google and social media
• NHS 111 is not a good source of information because of
the language barrier – this leads to additional visits to A&E
• The GP is a trusted source of information, but interpreting
is of variable quality and can contribute to inequality

17. Barriers to health
information
• Official letters from hospitals are only in
English, and people pay to have these
translated or rely on the community
• Lack of understanding of the health
systems, leading to confusion and missed
appointments
• Not everyone has the internet – digital
divide
• Lack of digital literacy for using NHS app,
compounded by barriers to understanding
English
• Sense of exclusion and marginalisation in
NHS services

18. Co-production workshops @ Aspiring
Communities Together
• Workshops took place at the Aspiring
Communities Together Firvale Centre
• Two initial workshops, one for men
(10)
and one for women (10)
• Two follow-up workshops for women
(4)
and men (4)

19. Trusted information sources
Women
● Trust GPs and NHS staff
● Like to consult with family about health
information needs
● Critical users of social media - can
access some useful information in their
own language and have a good
understanding of information quality
limitations
● Trust in the community centre staff
who act as mediators on behalf of the
community
Men
● Praise for the community centre “Yemenis
always go to the community, ask Abdul,
they have more information. If someone’s
not able to make the call themselves, we
call Abdul”
“At the community centre, everybody
shares information, everybody knows
different people's circumstances, cancer,
diabetes, sugar - “we’re all one”
● The mosque is a trusted source of
information and health support
● Google used for symptom checking
● Tik Tok and YouTube popular, but used with
caution

20. Barriers to health information
Women
● Getting to see a GP
● Reliance on children to interpret for health
professionals or translate letters
● Feeling that NHS staff do not always believe
the information they share, or are dismissive
towards non-English speakers
● Acknowledge that YouTube is not very
trustworthy, but the information is in Arabic
so is more accessible
Men
● Issues using phone-based services, long
waiting times and difficult to communicate
● Reliance on friends and relatives to interpret
as NHS interpreters do not always speak the
same version of Arabic
● Some people have limited access to internet -
enabled devices, or lack digital literacy
● Poor experience with UK health service
leading people to seek health information
from “doctors” on YouTube and TikTok

21. Co-production
workshops @ ISRAAC
• Workshop 1: 16 community
members took part
(10 women, 6 men)
• Workshop 2: 6 community members
took part
(4 women, 2 men)
• Space, refreshments and
interpreters supplied
by ISRAAC

22. Trusted information sources
• ISRAAC was a highly rated and trusted
source of health information “Talking to the
community centre is important because
somebody else had the same experience,
sharing that, exchanging information helps”
• Health information shared in the ISRAAC
WhatsApp group
• ISRAAC staff help community members
navigate the health service
• Men were more likely to seek health
information on You Tube, particularly for
weight loss.
• People often turn to Google, but with
caution

23. Barriers to health information
● Frustrations with the GP service: difficulty
getting appointments, 10 minute appointment
times, feeling that tests are not performed,
and as a result conditions get worse
● Lack of trust between some community
members and GPs
● Feeling “passed around” between different
NHS services and feeling lost in the system
● Although people turn to friends and family for
health information, they know that this is not
always accurate
● Language and digital divide are barriers

24. Some characteristics of Health information
literacy in these communities
• Drawing on trusted community support workers in
community centres for information
• Seeking help for interactions with the NHS
• Applying evaluation to health information on social
media
• Navigating health information in two languages /
two cultures
• Developing strategies to share their health
information with interpreters
• Developing an understanding of how the NHS works

25. Future research: empowering communities
Ladder of Participation
Arnstein, S (2019)
Aim for the top of the ladder!

26. How should we collect data - research methods
● Strong steer towards workshops & focus groups - people like to talk!
“Best way that Somali express themselves, their feelings is through
speech”
● Workshops that bring community members together with other groups
are highly valued
● Dislike of surveys: low literacy levels can make these inaccessible
● Roma community keen on arts-based methods
● Some interest in diaries and photos as ways the community can record
their experiences, but not for everyone!
● Everyone happy to talk to others
about research
● Participatory methods a priority

27. How can we involve the community in research?:
Roles for community members
● We suggested a range of roles that community members could take in
the research e.g. be on a patient panel, collect data, help analyse data,
sharing results
● Community members from all three groups are very keen to be
involved in the research across most the roles we suggested (some
differences depending on the group)
● Being trained as a researcher was seen to be a big
benefit
● Some people confident to help create training
materials or to work as patient educators / health
champions
● ISRAAC strength with video creation noted
● Vital that community members co-design research

28. Health information literacy research
priorities

29. 1. Building trust
between GP
services and
the
community
through
information
exchange
• Previous positive experiences of workshops that
bring NHS staff and communities together -
community members feel valued and listened to
• The community centres would be great locations
for community - NHS workshops
• Build on central role for the community centre as
a mediator for NHS services
• Review appointment booking procedures: People
with poor English find phone conversations
challenging
• Important to involve receptionists in community
workshops
• Workshops could improve community
understanding of the health system and support
improved health outcomes.

30. 2. Training for
students and
NHS workers:
information
sharing
between
communities
and the NHS
• Communities want NHS staff and students to
understand them and their culture and
background better
• Building cultural competence in staff and help
community members feel valued
• Research could improve information exchange
between the NHS and community members
• Existing NHS training networks to tap into
• We could work with members of each
community to co-create a training package for
staff / students
• Training packages could include video resources
created by community members
• Train community members as “patient
educators”

31. 3. Improving
hospital
letters
• Poor understanding of hospital letters
identified as a key problem by Yemeni and
Roma communities
• People ask for translations from the
community centre, relatives (sometimes
children) and even pay for translations
• Misunderstandings lead to missed
appointments, stress and negative views
of community members
• Potential for communities to work with
hospitals to improve letter information
communication

32. 4. Improving
understanding
of and
engagement
with the
health service
• Community led videos and leaflets to help
people understand how the NHS works and
share trusted useful information sources
• Train community health champions to
provide support to understand NHS
information
• Posters could help make the community
visible in doctor’s surgeries, and improve
trust
• Community led priorities for improved
information e.g. Chronic pain, trauma, FGM,
post-partum support, general diet & fitness,
diabetes etc

33. Funding bid development
• National Institute for Health & Care
Research: Research for patient benefit
• Stage 1 Bid submitted March 2024 for a
2-year project
• Collaborative process to develop the bid
with the 3 communities
• “Community link worker” post for each
community t bridge between the
university and the community

34. Reflections on
co-production
• Building relationships takes time
and effort
• The community groups were very
keen to work with the University
• Lots of expertise to draw on – in
communities and in the
university
• Community members were really
motivated to improve health –
pushing at an open door

35. Thanks!
• Thanks to LILAC delegates for
listening today
• Thanks to all the community
members who shared their views
• Thanks to the community centres
for hosting the workshops
• Thanks to the interpreters
• Special thanks to Meg and Anna
for their excellent work supporting
the project

36. Questions

37. References
● Ali, P. A., Salway, S., Such, E., Dearden, A., & Willox, M. (2019). Enhancing health literacy
through co-design: development of culturally appropriate materials on genetic risk and
customary consanguineous marriage. Primary Health Care Research & Development, 20, 1-13.
https://doi.org/10.1017/s1463423618000038
● Allinson, G., Bagherli, L., Williams, A., Robertson, M. H., & Ridley-Castle, T. (2019). Economic
impact evaluation of the British Library Business and IP Centre National Network.
● Arnstein, S. R. (2019). A Ladder of Citizen Participation. Journal of the American Planning
Association, 85(1), 24-34. https://doi.org/10.1080/01944363.2018.1559388
● Buchanan, S., & Nicol, E. (2019). Developing health information literacy in disengaged at-risk
populations. Journal of Documentation, 75(1), 172-189. https://doi.org/10.1108/jd-06-2018-
0086
● CILIP. (2018). CILIP definition of Information Literacy 2018.
https://infolit.org.uk/ILdefinitionCILIP2018.pdf
● Hicks, A. (2022). The missing link: Towards an integrated health and information literacy
research agenda. Social Science & Medicine, 292, 114592-114592.
https://doi.org/10.1016/j.socscimed.2021.114592
● Hylton, K. (2022). Race Equality Commission: An independent commission into racism and
racial disparities in Sheffield. S. R. E. Commission. https://www.sheffield.gov.uk/your-city-
council/race-equality-commission

38. References
● Mitchell, C., Fryer, K., Guess, N., Aminu, H., Jackson, B., Gordon, A., Reynolds, J., Huang, Q.,
Jayasooriya, S., Mawson, R., Lawy, T., Linton, E., & Brown, J. (2023). Underserved ‘Deep End’
populations: a critical analysis addressing the power imbalance in research. British Journal of
General Practice, 73(732), 326-329. https://doi.org/10.3399/bjgp23x733461
● Nutbeam, D., McGill, B., & Premkumar, P. (2018). Improving health literacy in community
populations: a review of progress. Health Promotion International, 33(5), 901-911.
https://doi.org/10.1093/heapro/dax015
● NHS England 2022) What are Healthcare inequalities. National Healthcare Inequalities
Improvement Programme Available: https://www. england.nhs.uk/about/equality/equality-
hub/national-healthcareinequalities-improvement-programme/what-are-
healthcareinequalities/#:~:text=Health%20inequalities%20are%20unfair%
20and,that%20is%20available%20to%20them
● Roberts, J. (2015). Local action on health inequalities: Improving health literacy to reduce
health inequalities. P. H. England.
https://assets.publishing.service.gov.uk/media/5a80b62d40f0b62302695133/4b_Health_Literac
y-Briefing.pdf
● Stormacq, C., Wosinski, J., Boillat, E., & Van Den Broucke, S. (2020). Effects of health literacy
interventions on health-related outcomes in socioeconomically disadvantaged adults living in
the community: a systematic review. JBI Evidence Synthesis, 18(7), 1389-1469.
https://doi.org/10.11124/jbisrir-d-18-00023
● Tembo, D., Hickey, G., Montenegro, C., Chandler, D., Nelson, E., Porter, K., Dikomitis, L.,
Chambers, M., Chimbari, M., Mumba, N., Beresford, P., Ekiikina, P. O., Musesengwa, R.,
Staniszewska, S., Coldham, T., & Rennard, U. (2021). Effective engagement and involvement
with community stakeholders in the co-production of global health research. BMJ, n178.
https://doi.org/10.1136/bmj.n178