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Co-design, Co-produce, Co-deliver: Collaboration is the only viable path to success

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In this presentation, delivered to the Translate external advisory board at their bi-annual meeting, the importance of patient and public involvement in research is highlighted, as well as simple strategies that researchers, healthcare professionals and private organisations can take to involve people in all aspects of research, from the bench to the bedside.

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Co-design, Co-produce, Co-deliver: Collaboration is the only viable path to success

  1. 1. Co-design, Co-produce, Co-deliver: Collaboration is the only viable path to success Simon R. Stones Patient Leader and Doctoral Researcher in Child and Family Health School of Healthcare, University of Leeds Translate Advisory Board Meeting @SimonRStones
  2. 2. 2 I wake up tired I stay up tired I go to bed tired I wake up with hope I stay up with hope I go to bed with hope I wake up in pain I stay up in pain I go to bed in pain
  3. 3. 3 1996 1999 2004 2006 2008 2012 2016 Diagnosed with juvenile idiopathic arthritis (JIA) aged 3 Commenced disease modifying treatment (Methotrexate) Commenced biological therapy (Etanercept) Onset of Crohn’s disease Diagnosed with Crohn’s disease aged 14 Diagnosed with fibromyalgia Started postgraduate research (PhD) 2012 Became involved in research 2012 Started undergraduate degree 2016 Graduated A journey of 21 years…
  4. 4. 4 What is patient and public involvement? Patients, carers and members of the public are active partners in research, rather than the ‘subjects’ or participants of research. It is about doing research with or by patients, carers and the public, not doing research to patients, carers and the public.
  5. 5. 5 • Where patients, carers/family members and members of the general public are actively involved in research projects and in research organisations.Involvement • Where information and knowledge about research is provided and disseminated to people, for example, a science fair. Engagement • When people take part in a research study (formally referred to as ‘subjects’). Participation
  6. 6. 6 Patient and public involvement in research is no longer a ‘nice thing to have’ The NIHR expects patient and public involvement to be embedded throughout all research proposals It is increasingly being recognised as important by other major funders and in some cases is a requirement The NHS Health Research Authority will ask how you will involve patients and the public in your research A budget for patient and public involvement must be costed and should be ring-fenced
  7. 7. 7 Exemplar model of how patient and public involvement can be scaled up Voluntary sector / NGOs Patient research partners Research community Ensuring scientific and technical excellence • Challenging researchers to address the real issues facing patients and carers • Improved understanding of proposals through technical insight Ensuring relevance
  8. 8. 8 The best research will involve patients and the public at every stage of the journey Set research priorities Delivering training to researchers Review funding applications Facilitate participation Monitor and advise Evaluate and disseminate outcomes Patients, carers and the public Developing an idea/ research question Developing a research application Carrying out research Dissemination & implementation
  9. 9. 9 How do you involve patients and the public in research? One-to-one discussions Focus groups and discussion groups Advisory and reference groups Management teams Co-researchers / research partners • University Research User Groups • Consortium Stakeholder Groups • NIHR GenerationR • NIHR Patient Research Ambassadors • eYPAGnet • Children’s Advisory Network (iCAN) • INVOLVE • NIHR CRN Clinical Studies Groups • Join Dementia Research (JDR) • Patient organisations / charities Through existing groups Social media and platforms such as People in Research
  10. 10. @SimonRStones @SimonRStones www.simonstones.com simon@simonstones.com

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