What does patient or public involvement in research mean?

Patient/public involvement in research means research that is done with or by the public and not to, about or for them (Involve www.invo.org.uk).  

It is possible that you may be asked to take part in a research study.  There are many varied types of research involvement; you may only be asked to complete a questionnaire, or to have blood tests, or to take medication.  Whatever your level of involvement, your participation is always voluntary and you are able to withdraw from a research study at any time, without giving a reason, and without it affecting your normal treatment.

For more information and for independent advice about being involved in a research study you can contact the Customer Care Service on 01256 486766 or at customercare@hhft.nhs.uk.

What does patient or public engagement in research mean?

Patient/public engagement in research means information and knowledge about research is provided and shared.

Examples of engagement are:

  • an open day at a research centre where members of the public are invited to find out about research
  • raising awareness of research through media such as television programmes, newspapers and social media
  • sharing the findings of a study to research participants, colleagues or members of the public

Why become involved in research?

You might decide to become involved with health research for a wide variety of reasons.

  • Personal knowledge and experience which you would like research(er/s) to take into account
  • A chance to give something back and help influence research to benefit others
  • To learn more about your condition and gain experience and confidence through working with others
  • Help bring about improvements to health and social care services and treatments for yourself and others
  • Help bring about improvements to the environment, health and wellbeing of your local community

One of the strongest motives people give for getting involved in research is to work with researchers to help bring about improvements to health and to improve existing services and treatments.

Why is it important for patients and the public to be involved with research?

We are all potential users of health services. There is an important distinction to be made between the perspective of patients, carers and service-users and those of people who have a professional role (such as doctors, dentists, physiotherapists, occupational therapists, nurses etc).

We need a range of perspectives to ensure research in the NHS is as effective and as relevant for patients as possible. By sharing your knowledge and experience you can make a real difference and help to change patients’ lives.

How can I help HHFT?

We are looking for a range of people, from all different backgrounds, to help shape our research. We sometimes need patients with specific health conditions and experiences, but we are also keen to hear from members of the public with a general interest in health research. Public and patient contributors can be involved in a range of activities, before, during and after a research study, for example:

  • identifying and prioritising research topics
  • being part of research advisory groups and steering groups
  • undertaking research projects
  • reporting and communicating research findings

Public and patient contributors can get involved in various tasks across the life cycle of research studies that are agreed in advance.

If you have any questions or would like more information about Patient and Public Involvement, please contact us by emailing research.team@hhft.nhs.uk

What is a Patient Research Ambassador?

At HHFT we have an enthusiastic team of Patient Research Ambassadors (PRAs). PRAs are volunteers who are passionate about health research and want to promote opportunities for more people to get involved. They also provide a public and patient perspective to shape our research strategy and the way we carry out research studies. The types of activities that PRAs can be involved in include:

  • Raising awareness of research to patients, carers and the local community
  • Helping to design patient-friendly research projects
  • Assisting with guiding the direction of the research strategy
  • Attending meetings to represent the patient/public perspective


Read more about our PRAs here: Patient Research Ambassadors