Uppsala Trial Forge Centre

U-TFC is part of the Trial Forge network and is hosted by U-CARE, Uppsala University, Sweden.

Our Centre focuses on two key methodological priorities:

1. Supporting the effective use of patient and public contribution in healthcare research, and
   
2. Increasing diversity among people who take part in healthcare research.

We aim to strengthen the evidence base for inclusive, user-centered research by developing and evaluating practical approaches that help researchers design, conduct, and report studies in collaboration with the people their work concerns.

Key people

• Louise von Essen, Programme Director of U-CARE, Professor at Uppsala University
  
• Shaun Treweek, Leader of Trial Forge, Professor at University of Aberdeen, Guest Professor at Uppsala University
  
• Contact:
  Frida Svedin, Project Coordinator for U-TFC
  

Patient and public contribution

Patient and public contribution means involving members of the public in the design, conduct, analysis, and dissemination of research. It is especially valuable if the people being involved have lived experience of the illness or condition being studied. Done actively and meaningfully, patient and public contribution leads to research that better reflects the needs and perspectives of those affected, and increases the likelihood that findings are relevant and implementable.

U-TFC supports researchers in developing and applying effective strategies for meaningful patient and public contribution. We provide practical guidance, training, and direct consultation to help integrate contribution into every stage of a research project.

Diversity in research

Participants in health research should reflect diverse cultures, characteristics and experiences including factors such as ethnicity, dimensions of gender, socioeconomic position and age (among others). A lack of diversity limits what we can say about applicability – to whom do the results apply?

However, much research fails to represent the communities it is aimed for. U-TFC works to identify and promote methods that makes research more inclusive. This includes engaging a wider range of voices in design decisions and ensuring participation opportunities reach underrepresented groups. By connecting patient and public contribution to diversity, U-TFC aims to contribute to research that is both more inclusive and more effective.

U-TFC offers expertise and collaboration opportunities for researchers who wish to strengthen patient and public contribution and diversity within their projects.

We can provide:

• Consultations or workshops on how to integrate patient and public contribution across the research life cycle, from planning and recruitment to data analysis and dissemination.
  
• Consultations or workshops on how to improve diversity in research.
  
• Methodological support in areas such as:
  • Developing and assessing recruitment and retention strategies to improve representation of under-served and under-represented groups.
  • Applying frameworks for meaningful patient and public contribution, such as co-design approaches or contribution evaluation tools.
  • Providing guidance on developing communication materials and consent processes that are culturally and linguistically accessible.
  • Designing and evaluating Studies Within A Trial (SWATs) to test strategies for engagement or diversity.
• Collaborative agreements for funded projects requiring methodological expertise in inclusion, contribution, or diversity-focused study design.

By combining evidence-based methods with practical tools, U-TFC helps ensure that studies are inclusive, relevant, and reflective of the populations they aim to serve.

Interested in collaborating with U-TFC?

Contact Frida Svedin, Project Coordinator for U-TFC, to discuss your project.

EDICT (Advancing Equity, Diversity, and Inclusion in Clinical Trials) is an EU-funded doctoral training network dedicated to transforming how equity, diversity, and inclusion principles are embedded in clinical trials across Europe. EDICT is part of the prestigious Marie Skłodowska-Curie Actions (MSCA) Doctoral Network under Horizon Europe. The network will recruit 16 PhD students across Europe, and an additional PhD student based at U-CARE.

The PhD students will train and collaborate across an international and interdisciplinary consortium that includes universities, hospitals, research institutes, and industry partners. In total, the network involves over 20 organisations across academia and the non-academic sector, representing countries such as Ireland, the United Kingdom, the Netherlands, Spain, France, Sweden, Denmark, Canada, and the United States.

U-CARE participates in EDICT as an Associated Partner, with involvement led by Professor Louise von Essen and Professor Shaun Treweek. U-CARE contributes to doctoral training and offers secondment opportunities within the network.

U-TFC is newly established, and our current focus is on providing methodological expertise and collaboration opportunities to ongoing and upcoming research projects. We support projects in designing and implementing patient and public contribution strategies and in enhancing diversity among participants.

U-TFC contributes to international Trial Forge initiatives, including methodological work on Studies Within A Trial (SWATs) to explore innovative ways of involving the public and increasing diversity. This work aims to strengthen the evidence base for effective patient and public contribution and diversity strategies.

U-TFC offers evidence-based frameworks and practical examples to support meaningful patient and public contribution and to promote diversity in healthcare research. Below, we provide recommended references organised into three categories: Public contribution, Diversity, and Public contribution and diversity, to make it easier for you as a researcher to locate relevant guidance and inspiration. A list of Trial Forge publications is available at Trial Forge’s website.

Public contribution

1. Bergholtz J, Wolf A, Crine V, Cleeve H, Santana MJ, Björkman I. Patient and public involvement in healthcare: a systematic mapping review of systematic reviews - identification of current research and possible directions for future research. BMJ Open. 2024;14(9):e083215.
   
2. Carlsson T, Marttala UM, Mattsson E. Being involved in research as a collaborator with experience of a prenatal diagnosis of congenital heart defect in the fetus: a qualitative study. Res Involv Engagem. 2020;6:10.
   
3. Chiwanga FS, Woodford J, Masika GM, Richards DA, Savi V, von Essen L. An mHealth intervention to improve guardians’ adherence to children’s follow-up care for acute lymphoblastic leukemia in Tanzania (GuardiansCan project): protocol for a development and feasibility study. JMIR Res Protoc. 2023;12:e48799.
   
4. Dengsø KE, Lindholm ST, Herling SF, Pedersen M, Nørskov KH, Collet MO, et al. Patient and public involvement in Nordic healthcare research: a scoping review of contemporary practice. Res Involv Engagem. 2023;9(1):72.
   
5. Gobat N, Slack C, Hannah S, Salzwedel J, Bladon G, Burgos JG, et al. Better engagement, better evidence: working in partnership with patients, the public, and communities in clinical trials with involvement and good participatory practice. Lancet Glob Health. 2025;13(4):e716–31.
   
6. Greenhalgh T, Hinton L, Finlay T, Macfarlane A, Fahy N, Clyde B, et al. Frameworks for supporting patient and public involvement in research: systematic review and co-design pilot. Health Expect. 2019;22(4):785–801.
   
7. Lammons W, Buffardi AL, Marks D. Measuring impacts of patient and public involvement and engagement (PPIE): a narrative review synthesis of review evidence. Res Involv Engagem. 2025;11(1):76.
   
8. Mah H, Dobson R, Thomson A. The importance of lived experience: a scoping review on the value of patient and public Involvement in health research. Health Expect. 2025;28(2):e70205.
   
9. Nissen S, Karlsson AW, Nørgaard B. Evaluation tools for patient and public involvement (PPI) in health research: a scoping review. Patient. 2025. Online ahead of print.
   
10. Shiely F, Murphy E, Gilles K, Hood K, O’Sullivan L, Harman N, et al. Trial participants’ self-reported understanding of randomisation phrases in participation information leaflets can be high, but acceptability of some descriptions is low, especially those linked to gambling and luck. Trials. 2024;25(1):391.
    
11. Svedin F, Österman Menander I, Blomberg O, Brantnell A, Farrand P, Lückner T, et al. Experience, process, and impact of involving informal caregivers of people with dementia as public contributors to inform the development of a complex intervention: a mixed-methods study. Health Expect. 2025;28(4):e70382.
    
12. Thiblin E, Lundgren J, Bergqvist M, Huynh T, Reuther C, Rösler S, et al. The acceptability and feasibility of an internet-administered, guided, low-intensity cognitive behavioural therapy intervention for parents of children treated for cancer: findings from a qualitative study involving public contributors. BMC Psychiatry. 2025;25(1):499.
    
13. Woodford J, Reuther C, Ljungberg JL, von Essen L. Involving parents of children treated for cancer in Sweden as public contributors to inform the design and conduct of an evaluation of internet-administered self-help for parents of children treated for cancer: a protocol. Res Involv Engagem. 2024;10(1):2.
    

Diversity

1. Biggs K, Hullock K, Dix C, Lane JA, Green H, Treweek S, et al. Time to STEP UP: methods and findings from the development of guidance to help researchers design inclusive clinical trials. BMC Med Res Methodol. 2024;24(1):227.
2. Bøttern J, Stage TB, Dunvald ACD. Sex, racial, and ethnic diversity in clinical trials. Clin Transl Sci. 2023;16(6):937–45.
3. Clark LT, Watkins L, Piña IL, Elmer M, Akinboboye O, Gorham M, et al. Increasing diversity in clinical trials: overcoming critical barriers. Curr Probl Cardiol. 2019;44(5):148–72.
4. Dawson S, Ostrovska B, Treweek S, Gillies K, Witham M, Devane D, et al. Sometimes different, often the same: guidance on how recruitment and retention in trials need to be tailored to enhance participation of ethnic minority groups: a qualitative interview study in England. J Clin Epidemiol. 2025;188:112005.
5. Gaber SN, Franck J, Widing H, Hällgren J, Mattsson E, Westman J. Excess mortality among people in homelessness with substance use disorders: a Swedish cohort study. J Epidemiol Community Health. 2024;78(8):473–8.
6. Johnson L, Gaber SN, Langella R, Turner-Moss E, Weleff J, Brothers T, et al. Outreach health-care services for people experiencing exclusion in high-income countries. Lancet Public Health. 2025;10(9):e784–93.
7. Mishra SR, Tan AC, Waller K, Lindley RI, Webster AC. Conceptualizing, operationalizing, and utilizing equity, diversity, and inclusion in clinical trials: a scoping review. J Clin Epidemiol. 2025;179:111649.
8. Owusu-Addo E, Bennor DM, Orkin AM, Chan AW, Welch VA, Treweek S, et al. Recruitment, retention and reporting of variables related to ethnic diversity in randomised controlled trials: an umbrella review. BMJ Open. 2024;14(8):e084889.
9. Treweek S, Dawson S, Khunti K, Akand M, Briel M, da Costa B, et al. Who is in your trial? Improving the reporting of participant characteristics in trial protocols and results. Trials. 2025;26(1):338.
10. Treweek S, Gillies K, Witham MD, Devane D, Khunti K, Bower P, et al. How should trial teams make decisions about the proportions and diversity of the ethnic groups in their trial? Trials. 2024;25(1):768.

Public contribution and diversity

1. Boxall C, Bishop FL, Alwan NA, Treweek S, Griffiths G, Ekeke N, et al. The role of intersectionality in shaping participant engagement with health research through digital methods: findings from a qualitative study. Trials. 2025;26(1):218.
2. Carlsson T, Kissiti R, Jirwe M, Mattsson E, von Essen L, Gottvall M. Addressing the health needs of underserved populations through public contribution: prioritisation and development of a peer support intervention for sexual and gender minority forced migrants. Health Expect. 2025;28(3):e70277.
3. Prowse SR, Treweek S, Larrea MJP, Brazzelli M, Uribe A. Tackling health inequalities in cancer screening: experiences of Eastern European and African communities in Northeast Scotland. Cancer Med. 2025;14(18):e71236.
4. Shepherd V, Svobodova M, Ivins N, Russell AM, Volkmer A, Jayes M, et al. Addressing the knowledge gap: development of stakeholder-informed training to improve the inclusion of adults with impaired capacity to consent in trials. Trials. 2025;26(1):429.
5. Treweek S, Brazzelli M, Crosse A, Daga S, Isaacs T, Sunga R. Using the GRADE evidence to decision framework to reach recommendations together with ethnic minority community organizations: the example of COVID-19 vaccine uptake in the United Kingdom. J Clin Epidemiol. 2024;168:111268.