According to the National Institute for Health Research, involving patients and members of the public in research can lead to better research, clearer outcomes, and faster uptake of new evidence. Patient and Public Involvement (PPI) in research is increasingly expected, if not required, by funders.
The R&D office has developed a leaflet "Help Research Thrive in the NHS – Information for Patients and Carers" aims to increase patient awareness of research and to explain its benefits and signpost sources of information.
Please find attached a poster, which uses the 2018/19 Patient Research Experience survey results to promote research.
Your help is vital to research, your support will help improve services and treatments for future generations. If you are asked to take part in a research project, please consider getting involved.
For example, you can:
Talk to researchers about your views, or fill in questionnaires
Take part in clinical trials of new treatments or drugs
Potentially shape the development of future research projects
Become a member of a public involvement in research group
If you are asked to take part in research:
NHS staff or researchers will explain the research and what it involves
You will have time to think about the research and will be offered the chance to ask questions before you decide
Be Part of Research animation - there's something for everyone!
Be Part of Research has launched an animation to inform members of the public about the many different ways to take part. Take a look and share it with anyone you feel would benefit.
Find out what research is happening -
NHS Choices
This NHS portal details comprehensive information about clinical trials and medical research; from taking part to safety and regulation.
NIHR Be Part of Research
Be Part of Research provides easy to understand information about health and social care research that is taking place in the UK.
The Guardian – Clinical Research Zone
The Guardian works in association with the National Institute for Health Research to provide the latest news and reports around clinical research. Here you can find league tables of research activity mapped by NHS Trusts.
Shape future research
Clincal Research Network (CRN): Eastern-Patient, carer and public involvement and engagement (PCPIE)
The CRN:Eastern supports patient and public involvement in research studies across the region. Please contact:
Donna (donna.coe@nihr.ac.uk) available on Mondays, Tuesdays and half a day every Thursday or
Anne (anne.sykes@nihr.ac.uk) on Wednesdays, Fridays, and half a day every Thursday.
People in Research
Here you can find information on how to work with researchers as patient representatives.
INVOLVE
A good source of information for public involvement in research.
INCLUDE
Information for researchers to improve inclusion of under-served groups in clinical research
Patients and the public really care about research; an IPSOS MORI poll in June 2011 indicated that:.
97% of the public believe it’s important for the NHS to support research into new treatments
93% want their local NHS to be encouraged or required to support research
72% would like to be offered opportunities to be involved in trials of new medicines or treatments if they suffered from a health condition that affects their day-to-day life.
The Network are encouraging patients and their carers to ask their family doctor about opportunities to participate in clinical research, and whether there may be a project that might be right for them and their loved ones
Less than 21% of patients feel very confident about asking their doctor about research – but Research Networks want to get the message across that it’s OK to ask
The NHS Constitution gives patients a right to participate in research if they are suitable for it and to have a say in how clinical research is done.
A number of research studies are ongoing in Cambridgeshire and Peterborough general practices and in community settings.
Here is a list of ongoing studies we are supporting.
The aim of the PRAI is to promote the crucial role of Patient Research Ambassadors (PRA) in local NHS services, find out all about the role of a PRA here.
Get Involved:
To join or for more details click here.
Handbook:
This is a handbook to support your planning and preparation for carrying out PPI activities in your research. The handbook can be found here.
Be Part of Research Volunteer Service:
By signing up to the Be Part of Research Volunteer Service you will be contacted about volunteering for research studies covering a wide range of health conditions (including COVID-19 studies).
This is a resource for researchers who want to involve people affected by cancer in their research. Toolkit introduces why Cancer Research UK feel PPI is important and it aims to take you through the common questions that may have about patient and public involvement in research. The toolkit provides resources for planning, conducting, and evaluating your involvement in research activities. By using the toolkit step by step it will help you to make patient and public involvement in your research a valuable and meaningful activity.
The National Institute for Health Research is inviting patients, carers, service users and members of the public interested in health and social care to join a number of its national and regional research committees.
The committees include public members, senior academics and NHS clinicians and practitioners, who together assess research proposals and make recommendations for funding.
NIHR have vacancies for a number of committees responsible for making funding recommendations in health and social care research.
For more information about the role, eligibility criteria and how to apply please following this link
Watch the video below to learn about how public members are making a difference.
Clinical research is how we develop new treatments and knowledge for better health and care, building the evidence for new approaches that are safe and effective.
To find out more click here.
Research helps the NHS understand how to improve the quality of healthcare, prevent ill health, ensure earlier diagnosis, and develop safer more effective treatments. Nationally the NHS is actively supporting research across hospitals, GP surgeries and in community service settings.
Research:
Helps ensure that treatments and services in the NHS are safe, effective and provide good value for money
Improves our knowledge about illnesses
Helps the NHS identify and provide the best possible care for the population and helps the NHS plan future services and treatments
Allows patients to feedback on their experiences of care
All NHS research projects are checked by a research ethics committee and by NHS organisations to ensure that projects are safe for participants.
The Addenbrookes PPI team in Cambridge has now launched a ‘YoungPeople in Research Programme’ to complement the regular PPI panel. It is comprised of twenty 1st year to 6th former’s from six local schools (mix of state and private). They will be able to review documents and meet with researchers to discuss projects or hold focus groups. This group will be running until June 2018 with the current cohort, so if you have any projects which focus on young people please contact anna.ellis@addenbrookes.nhs.uk to discuss ways in which the panel can help you.
Taking part in research is completely your own choice. You do not have to take part and you can change your mind at any time without giving any reason.
It’s Ok to Ask
Often patients may not be aware of opportunities to participate in research. We want you to know it’s ok to ask your family doctor about research happening locally to see whether there is a good quality study for which you may be suitable.