We have worked on a range of PPI projects including:

• Development of guidance for PPI
• Evaluations of PPI
• Carrying out independent consultations of patients/ the public
• Analysing the responses from public consultations
• Developing information and web resources for patients and the public
• Research and development projects
• Providing training and support for PPI

Development of guidance for PPI

Guidance for voluntary health organisations on helping with recruitment to research

We received a grant from The Wellcome Trust to work in partnership with a range of voluntary health organisations to produce guidelines for research staff. These help voluntary health organisations make decisions about which research projects they will  publicise for recruitment purposes, based on the views of service users and carers. We worked with four pilot organisations to develop these guidelines: Asthma UK, The Neurofibromatosis Association, Rethink and The Stroke Association.

Guidance on user involvement for voluntary organisations

We compiled a set of three guidelines for The Long Term Medical Conditions Alliance (now National Voices) to promote and support the involvement of service users and carers in voluntary health organisations. We involved staff, service users and carers from LMCA member organisations in shaping the development and content of these publications: Sharing our Experience, A Good Practice Guide and How to Develop a Strategy.

Guidance for lay reviewers

We worked with patients, members of the public and staff at the National Institute for Health Research Central Commissioning Facility to renew their guidance for lay reviewers in the Research for Patient Benefit Programme. This guidance focuses on the unique contributions that lay reviewers bring to the peer review process. 

Guidance for Chairs of committees with patient/public members

We worked with the UK Clinical Research Collaboration and the National Cancer Research Institute to develop guidance for chairs of committees with patient/public members.

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Evaluations of PPI

Evaluation of the National Diabetes Support Team (NDST) Service User Involvement Project

We were commissioned by Diabetes UK to evaluate the impact of involving people affected by diabetes in the work taken forward by the NDST to implement the National Service Framework for Diabetes.  This evaluation drew out lessons for other organisations involving users and carers at a national strategic level. 

Evaluation of Patient and Public Involvement in the UKCRC Advisory groups

We were commissioned by the UK Clinical Research Collaboration to evaluate the impact of having patients and members of the public involved in their Board an Advisory Groups and to evaluate the processes of recruitment and training and support offered to those members. This evaluation drew out lessons for involving people at a strategic level in a research organisation. 

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Carrying out independent consultations of patients/ the public

We were commissioned by Brighton and Hove City Primary Care Trust to carry out a consultation of stroke survivors and their carers in the Brighton & Hove area so as to inform the development of a Sussex-wide Commissioning Framework for adult neuro-rehabilitation.

We helped Macmillan Cancer Support survey people affected by cancer in Wales to find out about their experiences of receiving support and services.

We helped Breakthrough Breast Cancer develop its information and education strategy. This included running focus groups with people affected by cancer; interviewing staff, volunteers and trustees; and running a web-based survey.

We helped The Stroke Association carry out a survey of its members using aphasia -friendly materials. The results were fed into the development of the organisation’s ten-year strategy.

We consulted people affected by MS and people affected by arthritis on behalf of The MS Society and Arthritis Care to help them develop their formal response to a Government consultation on Incapacity Benefit.

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Analysing the responses from public consultations

We were commissioned by the South East Coast Strategic Health Authority to analyse the responses to the public consultation on the ‘Creating an NHS Fit for the Future’ Programme in Surrey and Sussex. We produced a report summarising the concerns people raised, as well as their opinions on the different proposals. Over 6,000 people took part in the consultation.

We were commissioned by the South East Coast Ambulance Trust to analyse the responses to the public consultation on their plans to become a Foundation Trust.

We were commissioned by West Sussex PCT to carry out an independent analysis of the results of their evaluation of their PALS service.

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Developing information and web resources for patients and the public

Glossary of research terms

We were commissioned by INVOLVE to develop a plain English glossary of research terms. We worked in partnership with service users, carers and researchers to develop this resource.

Information on clinical trials

We compiled a website for The National Library for Health with general information about clinical trials for patients and the public. It aims to help potential trial participants make a decision about whether to take part. We developed this website by asking members of the public and people who use services what they wanted to know about trials. The site is constructed around their questions rather than what researchers want to tell them. Click here to visit the site.

Information about mental health trials

We worked in partnership with mental health service users and carers to develop a pilot website for the National Institute of Mental Health for England about mental health clinical trials. This site was further developed to become the ‘TRiME’ website. To view the TRiME site, click here.

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Research and development projects

Evidence of the impact of patient and public involvement

We were commissioned by INVOLVE to carry out a review of articles and reports reflecting on involvement or describing the impact of involvement. These were summarised in a database and published by INVOLVE. They also formed the basis for a more extensive review of the literature describing the evidence of impact. Click here to see the final report. 

Setting research priorities

We were commissioned by the James Lind Alliance to carry out a review of UK clinical research funding organisations to find out whether an how they set research priorities, and if patients and/or the public are involved in the process. Click here to see the final report.

Patient safety and risk

We have run workshops on behalf of The National Patient Safety Agency to listen to the experiences of service users and carers. Topics have included hospital cleanliness, dispensing errors, MRSA and the National Clinical Assessment Service. We have produced clear reports from the workshops to help the NHS learn from people’s experience.

The Open University

We developed a unit on user involvement as part of the Open University's course 'towards a model of health policy and provision'.

The history of RAGE – Radiotherapy Action Group Exposure

We wrote the history of RAGE – a group of women who experienced terrible long-term side effects as a result of radiotherapy for breast cancer in the late 70’s and early 80’s. RAGE still exists and continues to offer support to nearly 250 members. The project involved reviewing all the historical documents and interviewing a wide range of stakeholders, including RAGE members, doctors and solicitors. To read RAGE’s story click here.

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Providing training and support for PPI

Training courses

We run a course for the National Institute for Health Research Clinical Research Network (NIHR CRN) on ‘Patient and public involvement in research’.  This course, which runs several times every year, is attended by service users, carers, clinicians, researchers and other staff from the Research Networks. To read more about the course click here.

Learning sets and shared learning groups

The User Involvement in Voluntary Organisations Shared Learning Group aims to encourage shared learning about user and/or carer involvement between medium and large voluntary sector organisations working within the UK. Members exchange views and experiences in order to develop their practice and ultimately to benefit the service users and carers with whom they work.

We provide secretariat and facilitation support for this group and produce background papers on issues such as the differences between user involvement and volunteering, evaluating user involvement and performance monitoring user involvement. For more information click here.

We ran a learning set for member organisations of the Association of Medical Research Charities (AMRC).  This focussed on how to develop and support PPI in the prioritising, commissioning and management of research supported by the charities. 

The learning set met regularly for a year, and continues to meet on an occasional basis to review progress and share learning.

One off workshops and events

We have planned and facilitated workshops and events for a range of organisations on specific issues.  These have included:

Two workshops for the UK Clinical Research Collaboration to inform the development of a PPI strategy, and one to launch a project to support PPI at a strategic level. 

A workshop for INVOLVE to inform the development of guidance for patients and members of the public who want to get involved in research.

A workshop for Macmillan Cancer Support to inform the development of the Cancer Reform Strategy.

A workshop for PPI and communications leads across the South East Coast Strategic Health Authority area on innovative engagement. 
Focus groups for staff and stakeholders in West Sussex PCT to develop ideas about a vision and some values for the Trust. 

Support for PPI staff

We provide ongoing one-to-one support to PPI staff in a range of national voluntary organisations.  This has included support to set up service user and carer advisory groups, user involvement strategies and training for staff and service users/carers. 

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