Patient and Public Involvement - information and signposting

The University of Bristol does not have centralised capacity to advise upon and facilitate Public and Patient Involvement (PPI) but we do recognise that it is an important element of research. We have created this resource to signpost researchers and members of the public who would like to get involved in research to expertise outside the University and to specific groups within the University with PPI capacity who may be able to advise you. These organisations host resources, training and advice on why PPI is important, how researchers can find the right groups to engage with and do so in a meaningful way, and how members of the public can get involved in research.

Please let us know if you work with, use resources from, or collaborate with the organisations below and tell us if you know of other PPI organisations or experts we should add to this list. If you are a member of the public and would like to get involved with a specific piece of EBI research get in touch and we will endeavour to connect you to the appropriate researcher.

What is patient and public involvement?

Patient and public involvement in research is about fostering active partnerships between the public and researchers to embed public and patients in the research process. It is not simply people taking part in research as research subjects. INVOLVE defines public involvement in research as research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. 

There are a variety of ways that public and patients can be involved in research, including:

  • helping researchers to identify the right questions
  • working with research funders to prioritise research
  • helping to design research studies
  • offering advice as members of a project steering group
  • contributing to carrying out the research and commenting on and developing research materials

If you are interested in keeping up to date with PPI news in the Bristol area we recommend signing up to the People in Health West of England's Newsflash. The organisations listed below can provide further guidance, support and resources for carrying out and understanding PPI.

How does it differ from Public Engagement?

The University of Bristol does have a Public Engagement Team who advise upon public engagement with research, but how does this differ from PPI? There is no simple answer to this as Public Engagement and PPI are part of the same spectrum and there is a grey area between them. However, in general Public Engagement is broader and describes the many ways in which staff and students interact with the public, from developing research ideas collaboratively to sharing the outcomes with as many different people as possible. It creates an opportunity for people to exchange ideas and information and learn from each other but often in a less formalised way that PPI calls for.

The National Coordinating Centre for Public Engagement describes Public Engagement as follows:

Public Engagement describes the myriad of ways in which the activity and benefits of higher education and research can be shared with the public. Engagement is by definition a two-way process, involving interaction and listening, with the goal of generating mutual benefit.

Who runs patient and public involvement at the University?

There is no centralised team at the University working on or advising on PPI. But that is not to say that the expertise do not exist here. Below are a list of teams or individuals who work on PPI and who, in some cases, may be able to help you with your PPI plans.

Contents

Centre for Academic and Primary Care
Centre for Child and Adolescent Health: Young People's Advisory Group
Elizabeth Blackwell Institute
School of Social and Community Medicine
Musculoskeletal Research Unit: Patient Experience Partnership in Research group

Centre for Academic and Primary Care

The Centre for Academic and Primary Care (CAPC), which sits within the School of Social and Community Medicine, have a Patient and Public Involvement and Engagement Coordinator coordinator, Catherine Jameson. If you are based in CAPC you can approach Catherine about your PPI plans and she will advise you on how to take them forwards.

Centre for Child and Adolescent Health: Young People's Advisory Group

The Centre for Child and Adolescent Health runs a Young People's Advisory Group led by Julie Mytton.  

Elizabeth Blackwell Institute

Whilst we do not have a PPI expert on our team our Public Engagement Associate Georgia Bladon can help to signpost you to resources and advice where possible and our Public Advisory Group provides regular opportunities for you to discuss research with public and patient representatives or, if you are a member of the public, to advise upon research.

School of Social and Community Medicine

If you are based within the School of Social and Community Medicine researcher Jenny Ingram may be able to help you with your PPI plans, in particular advising on PPI within grant applications. Dr Ingram is the Bristol contact for the Research Design Service (see below).

Musculoskeletal Research Unit: Patient Experience Partnership in Research group

The Patient Experience in Research group (PEP-R) is where researchers and patients meet and discuss research. PEP-R group members have had, or are having, treatment for musculoskeletal health conditions such as osteoarthritis, osteoporosis and ankylosing spondylitis. Whilst they cannot offer access to patients to those outside the Unit, they are happy to share learning and speak to researcher, or members of the public, about PPI work and what it entails. You can contact Rachael Gooberman-Hill (Reader in Applied Health Research) or Amanda Burston (Patient and Public Involvement Coordinator).

They also collaborated with North Bristol NHS Trust to design good practice guidance on patient and public involvement which many will find useful. 

Caption: Engagement Awards case study film of PEP-R's work, which won them an award in 2014. Credit: University of Bristol

Caption: Video about The Support and Treatment After joint Replacement (STAR) research project was developed in collaboration with the University of Bristol’s Musculoskeletal Research Unit’s patient involvement group. Credit: Yoho Media and University of Bristol

Who can help with patient and public involvement in the South West?

Contents

Avon Primary Care Research Collaborative (APCRC)
Healthwatch
Involve
James Lind Alliance
Parkinson's UK PPI
Patient Voice South
People in Health West of England
Raremark
Research Design Service
TwoCan Associates
University Hospitals Bristol
Well Aware

Avon Primary Care Research Collaborative (APCRC)

For: Advice, signposting
Highlight: Have produced a PPI policy document
APCRC supports researchers, evaluators and auditors within each Clinical Commissioning Group and within the Bristol Health Partners Health Integration Teams to actively involve patients and the public in all their activities.

Healthwatch

For: Public and patient input into health services
Contact: Care Forum
Healthwatch is the statutory service that children, young people and adults can contact to give feedback on the health and social care services they are using or trying to access. When someone contacts Healthwatch, Healthwatch can signpost them to other helpful services and support them to access advocacy support. Healthwatch then records their feedback and shares this (anonymously if the person wishes) with the service providers and commissioners. This process ensures that service users have their voice heard in decisions about the running of health and social care services. The Care Forum provides the independent Healthwatch services in Bristol, Bath and North East Somerset, Somerset, South Gloucestershire and Swindon. 

Involve

For: Resources, policy, advice
Involve is part of, and funded by, the National Institute for Health Research (NIHR) and supports active public involvement in NHS, public health and social care research. It is a  national advisory group that brings together expertise, insight and experience in the field of public involvement in research, with the aim of advancing it as an essential part of the process by which research is identified, prioritised, designed, conducted and disseminated. They provide high quality advice and guidance with lots of resources on their website.

James Lind Alliance

For: Information on identifying and setting research priorities
The James Lind Alliance is a non-profit making initiative bringing together patients, carers and clinicians in Priority Setting Partnerships (PSPs) to identify and prioritise the Top 10 uncertainties, or 'unanswered questions', about the effects of treatments that they agree are most important. They aim to ensure that those who fund health research are aware of what matters to both patients and clinicians.

Parkinson’s UK

For: Resources
Contact: General Contact
Parkinson’s UK have developed the Patient and Public Involvement: Resource for researchers to support researchers in involving the perspective of those affected by Parkinson’s in their research in a meaningful way. The content is also applicable to other types of research, with the hope that other organisations and research communities would find it useful.

Patient Voice South

For: Resources, advice
Patient Voice South is part of a national programme of changes putting the patient at the forefront of all decisions about their care. It was developed in partnership with South West and South Commissioning Support Units, and commissioned by NHS England, to support the transformation of participation.

People in Health West of England

For: Involvement opportunities in the area, events, training, resources, signposting
Contact: Rosie Davies, Research Fellow (Patient and Public Involvement) or Kim Thomas, Administrator
Highlight: Sign up to the newsletter Newsflash

Promotes a strong public voice in health research and service improvement in the West of England. People in Health West of England is a unique collaborative initiative supporting public involvement. It provides advice and guidance on involvement to professionals and members of the public; advertises involvement opportunities for the public; provides training and courses for public, patients and researchers; conferences and events. They also provide news and have resources available.

The involvement team work with a Strategy Group to develop a coordinated approach. The Strategy Group has eight public contributors alongside, representatives from the partner networks.

People in Health West of England is supported by these partners:

  • National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care West (CLAHRC West) works with partner organisations, including the NHS, local authorities and universities, to conduct applied health research and implement research evidence, to improve health and healthcare across the West.
  • NIHR Clinical Research Network West of England who provide the infrastructure to ensure timely and efficient delivery of high quality research in the NHS.
  • West of England Academic Health Science Network which brings together patients and the public with health and social care providers and industry to inform practices and support new innovative developments. They have established a joint Patient and Public Involvement group, organised a major conference to disseminate a major research study on the public’s role in developing healthcare services and created an electronic citizens panel. They also have two representatives for patient and public views on the board of directors, meaning that there is a voice from outside the healthcare community involved in the network’s projects to improve patient care and overall experience.
  • Bristol Health Partners, a strategic partnership of the Bristol city region’s NHS organisations, Universities and local authority to improve health and care through collaboration in research, innovation and education.
  • University of the West of England which initiated and leads the People in Health West of England collaboration. Key contacts are Professor David Evans and Dr Andy Gibson. 

Raremark

For: Finding participants, advice, support and facilitation of PPI and public engagement
Contact: Sarah Venugopal 
Raremark provides accessible information about research into rare conditions, space for people to sign up to participate in clinical trials and a forum for discussion. The team behind it are keen to hear from researchers about their needs from such a site, in particular with reference to the possibility of the site being a pathway to impact and a mechanism for public engagement.

Raremark have the tools to help get research in to the hands of patients, to support researchers with public engagement and PPI and provide them with not only the engagement metrics needed to show success, but a real community with real discussion. In return, the community become educated in the research and what it is like to participate in research, something that is desperately needed in rare disease communities. And they get to hear it from the people doing the work, which is invaluable.

Raremark can:

  • Help you write summaries or short blog pieces on your work in patient-friendly language, providing editing support
  • Write a blog on your research if it directly impacts our community
  • Interview you through Skype or other video software talking about the research to share with the community; share the interview as a written piece or edited clips (it won’t be a scare process, promise!)
  • Create short video clips / sound bites talking about your research or a related topic – we find these get the best engagement with patients
  • Share any content on social media to a targeted rare disease audience
  • Organise a live Q&A session with patients and share on social media

An example of one of the Raremark communities, in myasthenia gravis. The community can be seen on the website and via its corresponding Facebook page. At the moment, there are six rare disease communities, but this is growing. 

Research Design Service

For: Resources, advice on grant applications
Research Design Service supports researchers and clinicians preparing research proposals for submission to funding competitions for applied health or social care research and aims to promote active and meaningful PPI in research. Resources are available. The team, based in universities and the NHS across the South West, and funded by the NIHR, provide advice and practical support on developing grant applications. Bristol's contact for PPI is the University's Jenny Ingram (see above).

TwoCan Associates

For: Resources
TwoCan Associates help voluntary and statutory organisations involve people who use services in their work. They have an excellent guide to running successful PPI meetings.

University Hospitals Bristol

For: Finding participants
University Hospitals Bristol offers the opportunity to take part in research studies and clinical trials. The NIHR South West Medicines for Children Research Network Young Person's Advisory Group meets once a month in Bristol, and are also looking for parents/carers to inform future research studies.

Well Aware

For: Finding participants, advice
Contact: Care Forum
Well Aware hosts a database listing services, activities and support groups for health and wellbeing. This can help researchers find groups and activities in the area of the population their research project is focused on, map what already exists and identify gaps that their research might look to address.

Well Aware was commissioned by the Councils and Clinical Commissioning Groups in Bristol, South Gloucestershire and Bath and North East Somerset and created by the Care Forum, one of the Elizabeth Blackwell Institute community partners represented in our Public Advisory Group.

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