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Patient and Public Involvement in Clinical Research

Patient and Public Involvement in Clinical Research. Shona Brearley SDRN Manager. What does this involve ?. To engage with the public to involve them in research To improve public confidence in , and understanding of, clinical research To develop and support alliances with key groups

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Patient and Public Involvement in Clinical Research

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  1. Patient and Public Involvement in Clinical Research Shona Brearley SDRN Manager

  2. What does this involve ? • To engage with the public to involve them in research • To improve public confidence in , and understanding of, clinical research • To develop and support alliances with key groups • To identify and act on the barriers that impede PPI • To monitor and evaluate the effectiveness of PPI

  3. Involvement on Various levels 1) Participate in research 2) Commenting on or helping develop PIS 3) Developing research proposals 4) Disseminating research findings • Developing research priorities • Being a member of Steering / Management committees

  4. Improving Understanding of Research 1) Target patient / public health conferences to inform people of current research findings 2) Use the media to broadcast good news stories about research 3) Assess training needs of lay members of committees 4 ) Development of structured framework to provide background information on role of the patient /public representative

  5. Develop and support key alliances • Identify relevant patient /public groups • Act as PPI advocates with sponsors /funders of clinical research • Develop links with researchers to include PPI in grant applications /protocol writing • Work with PPI groups to ensure that they understand commercially sensitive research

  6. Barriers to PPI – patient perspective 1. Unfamiliarity with research process and jargon 2. Lack of understanding about the options and opportunities for involvement in clinical research 3. Time and costs of participating in PPI 4. Literacy and language skills 5. Will taking part in research have an impact on my health ?

  7. Barriers to PPI – researcher perspective 1. Lack of understanding of the role of PPI in clinical research, as a tool to obtain public support 2. Apprehension about the value of PPI activities either in study design or management or research infrastructure

  8. Monitor and evaluate the effectiveness of PPI • ‘ If you cant measure it then you cant improve it ‘ Lord Kelvin • Objectives can be easily defined • Metrics can be difficult to find

  9. PPI Activity Chart

  10. Generic Deliverables

  11. Summary • PPI means more buy in from the patients to ensure clinical research is meaningful • PPI should not just be a tick box exercise • PPI representatives should be selected carefully, not those with a hidden (or not so hidden) agenda • Payment or compensation for their time needs to be discussed at senior management level

  12. Summary • Training needs in PPI for both HCPs and patients /public need to be recognised and addressed • Cultural shift for academic research teams • Metrics to measure effectiveness need to be developed • Need published papers to show what effect PPI has both in study design / governance and recruitment

  13. www.sdrn.org.uk Thank You! Any Questions

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