It is important to involve and engage patients and the public at various stages of your research. This ensures that any research:
- Is worthy of public trust and confidence
- Is relevant and useful
- Increases public understanding of health data
However, we understand that learning how and where to begin involving and engaging patients and the public can be tricky. It can occur in many places within the research cycle and there are various ways it can be implemented. For that reason, we have several resources that could help get you and your team on the right track.
HDR UK Voices
At HDR UK, we have two central public groups. One of them is our Public Advisory Board, who ensure the work we do benefits the public. The other is HDR UK Voices, which is our network of public members across the UK, who help to shape the work of HDR UK and our partner organisations.
Every time there is a new opportunity, we email the public network to make them aware and invite them to get involved. This could be any sort of opportunity, including surveys, focus groups, advisory boards and more.
We also have a PPIE Professional network, who receive bi-weekly updates about the latest opportunities, in case they wish to share them with their public members. As part of this group, they can also share their opportunities with our Voices network. If you would be interested in joining, please email Rachel.Edwards@hdruk.ac.uk to learn more.
HDR UK Futures Training
In addition to this training, we also have several bitesize videos on HDR UK futures.
HDR UK Futures is a free and flexible virtual learning platform, which lets you learn from national and international experts however and whenever suits you. All you have to do to access our videos is sign up to the HDR UK Futures online platform for free.
Guidance for Researchers
We have recently developed some recommendations for Public Involvement and Engagement (PIE) in sensitive data research in collaboration with UKRI and ADR UK as part of the DARE UK initiative. They were developed by conducting a theory-led evaluation of PIE leads’ experiences of designing and carrying out PIE activities in nine different data research projects. You can find these recommendations here:
PPIE Best Practice Standards
The PIE Best Practice Standards are currently in draft and undergoing development after public and professional feedback. Until these standards have been finalised, also consult the UK Standards for Public Involvement and the GRIPP2 checklist to inform our practices, as highlighted in the recently developed PIE playbook.
Resources for PPIE Professionals
The PEDRI initiative are also working towards creating a collection of resources that PPIE professionals can use in their day-to-day work. As part of this, a survey of what resources are needed was conducted with the public. We are happy to share the results of this survey, which will help shape the resource collection.
This survey is also available in easy read format.
If you’d like to learn more about any of these opportunities, email us at firstname.lastname@example.org
Training and Workshops
We can provide bespoke training to give you and your team the tools, guidance, and experience needed to embed patient and public involvement and engagement (PPIE) in your research. Though we have guiding principles that we follow, we can still tailor this training to the needs of your team based on:
- The level of experience your team already has in PPIE
- The purpose for your involvement or engagement
- Which patients or members of the public you wish to reach
Through our training, we hope to give researchers the tools and understanding to embed PPIE in their work. Workshops can be either held in person, hybrid, or fully online. We encourage active communication so that we can select the case studies, learning aids, and facilitative activities that will be most helpful for your training.
If you’re interested in receiving this training for your team, please email us at email@example.com
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