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Patients and the Public

New and better treatments and health and social care services become available because people take part in research. More and more patients and service users participate in such research.

Now, members of the public are also getting involved in advising professionals about what research should be funded and helping to design and do research studies. Some members of the public become researchers themselves. This is Public Involvement in Research, sometimes called PCPIE (Patient Carer Public Involvement and Engagement) in research for short.

The term ‘public’ includes:

  • patients,
  • potential patients,
  • carers,
  • people who use health and social care services,
  • people from organisations that represent people who use services.

Public involvement in research means that research is being done ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

What the public can do in health research includes, for example:

There is a national PCPIE initiative, the Patient Research Ambassador Initiative, that all CRNs  including Y&H participate in and support. The purpose is to promote PCPIE across England and Wales.  A Patient Research Ambassador (PRA) is someone who promotes health research from a patient point of view. They could be a patient, service user, carer or lay person who is enthusiastic about health research and willing to communicate that to other patients and public as well as healthcare professionals. For more details and information on how to register to be a PRA, click here.

Here at CRN Yorkshire and Humber we have a small team to help both the public and professionals understand, do and promote PCPIE in Research. The team is:

    • Maggie Peat, who is the CRN Y&H PCPIE  Advisor with lengthy experience and interest in involving and engaging patients carers and the public in research. You can contact Maggie at maggie.peat@nihr.ac.uk
    • Srdjan Ljubojevic, who is  CRN Y&H Research Delivery Manager, leading in cancer and mental health research and responsible for Network’s PCPIE engagement within the region. You can contact Srdjan at srdjan.ljubojevic@nihr.ac.uk
    • Evie Chandler, who is the Patient Public and Carer Involvement and Engagement Officer in Y&H CRN. Evie promotes and supports PCPIE activities in the Y&H region and is the first point of contact for the team. You can contact Evie at evie.chandler@nihr.ac.uk, or ring her at  01132060467 or at @EviePPICRNyh

Ways in which we can help include:

  • Resources to help both members of the public and researchers understand PCPIE and do it
  • Advice about PCPIE in research
  • Creating and supporting PCPIE networks in the region
  • Support new PRAs until they find an organisation/area they wish to be involved in

What is a clinical trial?

Clinical trials are research studies involving patients, which compare a new or different type of treatment with the best treatment currently available (if there is one). Some clinical trials look at possible ways to prevent illnesses, for example by testing new vaccines.

How can I get involved?

Join Dementia Research 

Dementia is one of the biggest challenges we face today. The number of people with Alzheimer's disease, vascular dementia and other types of dementia, is set to double over the next 30 years.
Research offers hope. It is only through research that we can understand what causes the disease, develop effective treatments, improve care and hopefully one day find a cure.

Join Dementia Research now

For queries relating to Join Dementia Research studies in the Yorkshire and Humber region, email jdryh@nihr.ac.uk