NIHR Oxford Biomedical Research Centre

Enabling translational research through partnership

MENUMENU
  • About
    • About the NIHR Oxford Biomedical Research Centre
    • A Guide to What We Do
    • Activities during COVID-19
    • Strategic Partnership Board
    • Steering Committee
    • Promoting Equality, Diversity and Inclusion in Research
    • Current Vacancies
    • Contact Us
    • Stay in Touch
  • Research
        • OUR 20 RESEARCH THEMES

        • Antimicrobial Resistance and Modernising Microbiology
        • Cardiovascular
        • Clinical Informatics and Big Data
        • Diabetes and Metabolism
        • Gastroenterology and Mucosal Immunity
        • Genomic Medicine
        • Haematology and Stem Cells
        • Imaging
        • Molecular Diagnostics
        • Multi-Modal Cancer Therapies
        • Multi-Morbidity and Long-Term Conditions
        • Musculoskeletal
        • Neurological Conditions
        • Obesity, Diet and Lifestyle
        • Partnerships for Health, Wealth and Innovation
        • Respiratory
        • Stroke and Vascular Dementia
        • Surgical Innovation and Evaluation
        • Technology and Digital Health
        • Vaccines for Emerging and Endemic Diseases
        • Oxford Biomedical Research Centre activities during COVID-19
  • Patient & Public Involvement
    • About Patient and Public Involvement
      • Our Work with Patients and the Public
      • Learn More About Our Research
      • Patient Involvement Blog
      • External Links
    • For Patients, Carers and the Public
      • Current Listings for Involvement
      • REGISTER INTEREST
      • Patient and Public Involvement Workshops
    • PPI Resources for Researchers
      • PPI Strategy
      • A Researcher’s Guide to PPI
      • PPI Resources for Researchers
      • PPI Briefing Notes
      • PPI Case Studies
      • PPI Advisory Group
      • PPI Events for Researchers
      • Post a PPI Listing
      • Public Engagement for Researchers
      • Public Engagement Case Studies
  • Training Hub
    • Training Hub
    • Fellowships
    • Funding Opportunities
    • Clinical Researchers and Scientists
    • Nurses, Midwives and Allied Health Professionals
    • Next Generation Leaders Programme
    • Useful Links
    • Training and Education Resources
    • Upcoming Training Events & Courses
  • Industry
    • Collaborate with Oxford BRC
    • What Can We Do For Your Organisation?
    • Who Do We Work With?
    • IP and Licensing
    • Contacts for Industry
  • Videos
  • News
  • Events

Patient and Public Involvement

You are here: Home > Patient Involvement Blog > Experimenting with PPI

Experimenting with PPI

9 October 2015

This week’s blog comes to you from Joanna Crocker, Patient Involvement Impact Assessment Fellow with the NIHR Oxford Biomedical Research Centre

What difference does patient and public involvement (PPI) make? This is one of the most complex and fascinating topics I have ever had the pleasure to work on, as well as one of the most challenging and controversial. There are mounting calls for evidence to demonstrate the value (or otherwise) of PPI, to justify the extra time and money required to involve patients and members of the public in research. Even if we believe that PPI is the ‘right’ thing to do on moral grounds, how should the limited time and budget for PPI be best spent to ensure the most benefit for patients and the least possible harm? Who should be involved, when and how? We need better evidence of the impact of PPI, in its many different guises, to be able to answer these questions. And it’s not just researchers who think so; many PPI contributors interviewed for our recent HealthTalk project agreed. As one carer put it, ‘This is a big investment that we’re making, and so we ought to be contributing something. It’s not just about having quite a nice time’!

The PIRRIST study will take a common problem in clinical trials – poor recruitment and retention of participants – and see whether these can be measurably improved by PPI. But not just any PPI… If we invite Mrs B., a breast cancer survivor, to join an advisory panel for a breast cancer clinical trial, would we expect her involvement to improve recruitment to the trial? Her impact will depend on many things, including her unique skills, experience, personality, links to wider networks of patients, and the behaviour of the rest of the panel and research team, such as: how much of a voice they give her (how much they listen), how early they involve her, what they ask her to do. If the research team involves Mrs B. after all the decisions about the clinical trial and recruitment have been made, or do not seriously consider what she has to say, how could we expect her involvement to influence recruitment? We might conclude that PPI has no impact on recruitment, when in fact it might, if done differently.

So, PIRRIST will develop a PPI intervention designed to enhance recruitment and retention in surgical trials. Recruitment and retention are attractive targets, since they are often problematic and this can lead to complete failure of clinical trials (meaning lots of wasted time and money, and no benefit for patients). PIRRIST is part of the Trial Forge initiative to improve the efficiency of clinical trials, and focuses on surgical trials where recruitment and retention can be particularly difficult.

Our intervention will be developed using the best available evidence and knowledge so that it has genuine potential to improve recruitment and retention. Some of this evidence already exists, and some of it will be collected by us through surveys, focus groups and a workshop with ‘key players’ over the next 12 months. Those key players are people who ‘do’ PPI and who recruit and retain participants in surgical trials – involved patients and members of the public, surgical trial investigators and administrators, research nurses and PPI co-ordinators. The workshop at the end of the process will result in one PPI intervention that all agree is most promising.

We hope to then test this intervention experimentally, by comparing the recruitment and retention of surgical trial participants with and without the intervention, to see whether the intervention makes a measurable difference. A key part of our study will also investigate how different situations and practices influence the way the intervention works and how much difference it makes, as well as other impacts it may have, positive or negative, beyond recruitment and retention. Some people argue that PPI is so complex and context-dependent that it should not be subjected to experimental testing. And such experiments are few and far between. But for now I believe this type of evaluation can play an important role in assessing the impact of PPI, alongside other methods. Without it, we simply can’t say attribute recruitment successes to PPI. We can’t say that PPI ‘works’ in this sense, let alone ‘when’ and ‘how’.

Perhaps this desire to apply an experimental approach to PPI stems from my original training in biomedical science, which I will probably never shake off (and secretly don’t want to). And perhaps I will be persuaded to change my mind in time. But it is certainly very exciting to be having a go, and I can’t wait to reveal what our intervention will be and share our findings with you… Watch this space!

Joanna Crocker is a postdoctoral Research Fellow funded by the NIHR Oxford Biomedical Research Centre. She is very grateful to a fantastically supportive and inspiring team of academic and lay colleagues and advisors, and for additional support from the MRC Network of Hubs for Trials Methodology Research.

Comment on this article Cancel reply

Your email address will not be published. Required fields are marked *

Comment Policy: Comments are welcome from members of the public and health professionals alike. All comments are reviewed before publication. Your email address will not be published.

Patient and Public Involvement

  • Our Work with Patients and the Public
  • Learn More About Our Research
  • Patient Involvement Blog
  • External Links

For Patients, Carers and Members of the Public

  • Current Listings for Patient and Public Involvement
  • Register interest
  • Patient and Public Involvement Workshops
Oxford Blood Group for Patients

PPI for Researchers

  • PPI Strategy
  • A Researcher’s Guide to PPI
  • PPI Resources for Researchers
  • PPI Briefing Notes
  • PPI Case Studies
  • PPI Advisory Group
  • PPI Events for Researchers
  • Post a Listing for Public Involvement
  • Public Engagement for Researchers
  • Public Engagement Case Studies

Subscribe to the Oxford BRC Newsletter

Keep informed about the work of the Oxford BRC by subscribing to our Mailchimp e-newsletter. It is produced bimonthly and delivers news and information about upcoming events straight to your inbox.

Subscribe Now

Oxford BRC on Social Media

  • Facebook
  • Twitter
  • YouTube

Feedback

We’d love to hear your feedback. Please contact us at obrcenquiries@ouh.nhs.uk

  • Sitemap
  • Data Control and Privacy
  • Accessibility
  • Our Partners
  • Disclaimer
  • Contact

Copyright © 2021 NIHR Oxford Biomedical Research Centre

Cookies

This site uses cookies See our data control and privacy page