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. 

People with lived experience can contribute in a range of ways, depending on their interests, skills and the resources available.

For example, they could contribute to a journal article by helping to ensure that the patient or lay perspective is appropriately represented, contributing text or a quote, or reviewing the language used. They could help develop conference presentations and materials, contribute statements or quotes, or contribute a short video that could be embedded within a PowerPoint presentation. Where appropriate and resources allow, this could also include a co-presenting role.

Involvement at this stage can help identify the most useful messages for different audiences and the most appropriate ways to communicate the findings beyond academic publications and conferences.

Here’s a list of ways you could involve people

  • 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
  • Helping to develop and plan stakeholder events
  • Collaborating with researchers to review and disseminate the findings of research to academic and non-academic audience
  • Co-authoring blogs
  • Consider and share practical thoughts for implementation
  • Helping to train health professionals or other people with lived experience 
  • Collaborating to evaluate the research process, their role, and the Patient and Public Involvement overall

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 we support you?

Our Research Liaison Team are here to help! 

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  

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

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.

Top tips for speaking in plain English

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 trial

How 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 Hub

The 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 testing