Members of the public can get involved in health and social care research in a variety of meaningful ways—ranging from helping shape what research gets done, to participating in studies, to helping share findings. These roles generally fall into two broad categories: public involvement and participation.
Public Involvement in Research
Wednesday, 30 April, 2025
Download Public Involvement in Research.pdf (201.9 KB)Health Innovation Network 2023-24 Impact Report
Monday, 20 January, 2025
Examples of Questions You Should Ask Regarding A Health and Social Care Project
Tuesday, 11 July, 2023
STANDARD QUESTIONS FOR ANY NHS PROJECT INVOLVING PATIENTS AND PUBLIC REPRESENTATIVES
“NHS England must make arrangements to secure that individuals to whom the services are being or may be provided and their carers and representatives, if any, are involved (whether by being consulted or being provided with information) in the planning of commissioning arrangements and in the development and consideration of proposals (NHS Health and Care Act section 13Q 2022)”. Optimal performance is achieved by truly engaging in co-production not tokenistic box ticking.
The following questions will help you to guage whether this is taking place:
Have patients and public been invited to participate from the beginning of the project?
How will the necessary expenses and time spent in the role be compensated?
Face-to-Face meetings develop more synergy than webinars so have face-to-face meetings been factored in and scheduled as part of the workplan?
Are the briefing papers be sent to members seven days before the meeting so they can study contents?
Is the text in presentations of sufficient size to be easily read when projected on display screen?
Is full documentation available for the patient in both digital and printed format?
Does all information meet the simplistic requirements of the Write to Me project?
Have all acronyms been expanded?
Is there a glossary of all acronyms been provided in large documents?
Medical Research Trials and Pilots
Has a record of the interview with the Multi-Disciplinary Team or consultant been provided?
Have the patients involved in research program been given a holistic needs assessment?
Has a personal contact (advanced nurse practitioner or similar) been identified to the patient?
Does the programme comply with GDPR requirements on data security?
Have patients in the trial been reassured as to how their personal information will be shared?
Is the research being carried out uniformly across all areas of England?
Does the service protect LGBTQIA+ interests?
Are the needs of the patient with highest indices of social deprivation (homeless, sex workers, travelers, people from minority ethnicities) been addressed?
Paul Osman 9th July 2023
Research demand signalling National Mental Health Programme Version 1.0 September 2022
Tuesday, 13 December, 2022
The National Mental Health Programme is broad ranging and there are many care pathways in mental health for children and in adults. It has been challenging to develop a succinct list of the research priorities for all the mental health policy areas (demand signalling). The list given in this report is the joint response from service users, mental health charities, clinicians, researchers and policy developers; the overarching research needs to underpin implementation of the Mental Health Long Term Plan spanning the decade from 2019.
Did You Know
Tuesday, 23 August, 2022
25 Useful Tips on Entitlements/Benefits for Carers
Public Policy Projects: A Fairer Future TOWARDS A MORE EQUITABLE DELIVERY OF CARE FOR THOSE WITH RARE DISEASES AND CONDITIONS IN THE UK
Monday, 11 July, 2022
Living with a rare disease or condition poses many challenges. Over the past decade, improving the delivery of care for the 3.5 million people living with rare diseases or conditions within the UK has been the central focus of the work of many.
In January 2021, the UK Rare Disease Framework was published by the Government. This identified four key priorities to be addressed if continued improvement in services and support for the approximately 1 in 17 UK citizens affected by a rare disease is to be realised in the lifetime of this Framework.
The four priorities are:
1. Helping patients get a final diagnosis faster
2. Increasing awareness of rare diseases among healthcare professionals
3. Better coordination of care
4. Improving access to specialist care, treatments and medicines
https://publicpolicyprojects.com/wp-content/uploads/sites/6/2022/07/PPP-Rare-Disease-Report-622.pdf