Effective dissemination of your results
Patient engagement in PPIE
Involving people with lived experience in the dissemination of your research can add weight and insight and accessibility to the project. It can showcase the most important findings for people with lived experience, and the best way to explain your project. People with arthritis could also reach or access people that you are unable to. Findings would have a greater reach, and therefore potential impact on more people affected by arthritis.
It is really important to share the results of your work with the participants who took part and let them know what the findings are. Effective dissemination can help identify and generate funding for further research.
Involving people with arthritis in dissemination and communication could include:
- Co-presenting the findings of research
- Co-authoring the publication
- Sharing or writing posts on social media, forums, and other platforms
- Reviewing language and tone
- Co-producing a communications plan, including channels and key messages
- Suggesting best ways to implement results for maximum impact
- Producing flyers
- Contacting journalists.
Things to remember during this process:
- Communicate clearly what the involved person will be presenting/sharing.
- Ensure people with lived experience feel comfortable with their role in dissemination.
- Make sure that anyone sharing project outputs has the correct data and guidance on a suitable tone.
- Make sure you write up your findings simply and clearly, using as little jargon and technical terminology as possible.
- Always remember that you are writing for the general public.
Remember, if a person with lived experience has been involved from the beginning, then they will have ownership and their own knowledge of the project, and may therefore feel more confident writing up and sharing the work.
How can Arthritis UK support?
Please come and talk to us about your research results and your plans for sharing your research findings with people with lived experience of arthritis, health professionals and researchers. Our Research Liaison team will be happy to discuss your results and how we can support your dissemination, please get in touch with them on researchliaison@arthritis-uk.org
We have a group of Researcher Partners, people with lived experience of arthritis, who are interested in shaping your dissemination plans and communications. Complete this form and send it to us if you would like to get them involved in your dissemination.
Resources
Stage 5: Disseminating | Faculty of Medicine | Imperial College London Useful information on including people with lived experience in the dissemination of research, as well as real life examples of where researchers have used public involvement at this research stage
Link Group toolkit 2024 (keele.ac.uk) This toolkit gives ideas for dissemination across a variety of platforms in a helpful toolkit from page 7.
The Health Open Research platform, founded by the Association of medical research charities and listed on PubMed Central (an archive of biomedical and life sciences journal literature), enables researchers to publish any research outputs regardless of novelty or outcome, supporting reproducibility, transparency and impact.
Communicating in lay language
Lay communication is an important skill for researchers. Examples of lay communication include writing lay summaries in grant applications, reporting to your funders, working with policy makers, staging public engagement events, PPI activities – and of course, speaking to your friends and family about what you do.
PPIE case studies
The PROP OA randomised control trial set in primary care and the community aimed to determine the clinical and cost-effectiveness of knee braces in the management of osteoarthritis, and included PPIE in all stages of their work.
PROP OA knee brace trialHow Alleviate created an online, safe platform for researchers to access pain-related data, working with Health Data Research UK (HDR UK), to better tackle the challenges in understanding the complexity and unpredictability of pain.
Alleviate Pain Data HubThe Advance Pain Discovery Platform project, SenseCheQ, conducted community-based sensory testing for early identification of Chemotherapy Induced Peripheral Neuropathy, and weaved PPIE through all parts of the research cycle.
SenseCheQ sensory testingFundamentals of PPIE
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Overview of PPIE standards & guidelines
This page combines the UK Standards for Involvement in Research, EULAR recommendations and Arthritis UK guidelines to give one helpful point of reference.
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Checklist for planning your involvement
Developing an involvement plan before you begin will maximise the benefit of your activities and ensure that they are suitable and accessible for people with arthritis.
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Involvement in research planning template for researchers
This document aims to support you to plan and consider how to involve people with arthritis in your research project or programme.
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COPPACA Community Project
COPPACA Community Project