Patient and Public Involvement


The Liverpool NIHR Pancreas Biomedical Research Unit (PBRU) is part of the NHS and is funded by the National Institute of Health Research (NIHR), which is a new and expanding NHS research organisation set up in 2006.

The vision of the NIHR 'to improve the health and wealth of the nation through research’.

The mission of the NIHR 'to maintain a health research system in which the NHS supports outstanding individuals working in world-class facilities, conducting leading-edge research, focused on the needs of patients and the public’.

The remit of the NIHR is to commission and fund NHS and social care research that leads to new treatments, devices, diagnostics and best practice to provide better care for patients and the public. To make sure that the research they commission is truly in the public interest, they are leading the way in encouraging patients and the public to get involved in every area of their work.

The NIHR is committed to working with clinicians and managers in NHS trusts to make sure that patients are aware of opportunities to take part in research relevant to them, and have the necessary information to make informed choices on whether to participate. To this end, when they commission new studies, research teams routinely have to show that they have sought input from patients, carers and the public.
 

Making patients the driving force

The NIHR encourages patients and the public to be actively involved in all NIHR-funded health and social care research, in order to:
• Identify the important questions that health and social care research needs to answer.
• Give their views on research proposals alongside clinicians, methodologists, scientists, and public health and other professionals.
• Help assess proposals for funding.
• Take part in clinical trials and other health and social care research studies, not just as subjects but as active partners in the research process.

Public involvement leads to better research

Greater public involvement can lead to better research and clearer health outcomes, and can save money.

A recent study by INVOLVE Exploring Impact: Public involvement in NHS, public health and social care research, reported that public involvement in research helps increase recruitment to all types of research.
In clinical research it helped to ensure acceptability of trials, and participants felt them to be ethical, well designed and to have relevant outcome measures. It was also found to be of value in qualitative research where participants are asked to share their views and experiences. “ 

INVOLVE

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How do we involve patients and the public in our research?

· We provide information and support to help patients and their families understand the nature and treatment of pancreas disorders such as pancreatitis and pancreas cancer.


· We recruit patients and healthy volunteers into ethically and regulatory approved clinical trials and studies, with the aim of discovering new effective treatments for pancreatic diseases. The trials are sensitively and carefully explained to patients and volunteers who have to give their consent to take part in a trial.


· To make it easier for patients to contribute to research studies, the Trust is introducing a ‘Consent for consent’ procedure to encourage all patients to take part in research; our objective is that all patients served by the Trust could sign this

The Royal College of Nursing (RCN) have created a section on their website called the RCN Guidance on User Involvement in Research. This was created by Nurses and they created a twelve-page booklet which provides answers to 10 key questions which may help you to ensure meaningful user involvement in your research. Their key points include:

  • What does user involvement mean?
  • Can user involvement contribute to research?
  • Is user involvement necessary?
  • What do I do if my research does not lend itself to user involvement?
  • How should I reimburse, reward or recognise users for their involvement?
  • Are there any ethical issues relating to user involvement?
  • What do users need to know?
  • How should I go about finding users to get involved?
  • How do I involve people from marginal or seldom heard groups?
  • Are there any challenges I should prepare for?
  • How will I know if my approach to involvement worked?
  • How can I find out more?

Please go to their web pages to find out more: http://www.rcn.org.uk/development/researchanddevelopment/rs/publications_and_position_statements/user_involvement

• We work with the local (e.g. Merseyside and Cheshire Cancer Research Network) and other National Clinical Research Networks to facilitate opening new clinical trials.

• We work closely with the cancer charity, Cancer Research UK, who fund the Liverpool CR-UK Centre and in partnership with the NIHR the Liverpool Experimental Cancer Medicine Centre.

• We hold open days to show patients and the public our research.

• We have developed this website to provide news and explanation about our research, including how patients and their relatives can contact our Nurses and various other help groups.

Patients can visit a number of websites that will be able to help them with their decision to become a patient volunteer in a trial.  Please find below some information regarding a few of these websites:  

UKCRC

The UK Clinical Research Collaboration (UKCRC) provides a forum that enables all Partners to work together to transform the clinical research environment in the UK.

The forum promotes a strategic approach to the identification of opportunities and obstacles to clinical research and their resolution. In so doing the UKCRC aims to benefit the public and patients by improving national health and increasing national wealth.   They have 4 main areas of support – Clinical Research, Experimental Research, Clinical trials Units and e-health Research.

Clinical Research

Clinical research networks have been established across the UK to provide the infrastructure to support high quality clinical studies across all areas of disease and clinical need.

Experimental Research

The major funding bodies within the UKCRC have undertaken several joint initiatives to strengthen the infrastructure for experimental medicine research and early-phase clinical trials in the UK.

Clinical Trials Units

UKCRC Registration Process has been established for Clinical Trials Units responsible for coordinating multi-centre clinical studies. This is intended to help improve the quality and quantity of available expertise to carry out UK clinical trials.

e-health Research

The National Health Service treats the UK population from 'cradle to grave'. Through carefully regulated use of the IT systems that support NHS healthcare management, the UK has the potential to become a global leader in e-health research.

Please find below the link to their website: http://www.ukcrc.org/home/

People In Research

The People In Research website has 3 main themes:

  • Find out about involvement
  • Getting Involved
  • Find people to involve

The website was set-up by INVOLVE on behalf of the UKCRC as an answer to members of the public asking how they could get involved in research and organisations asking how to find people to get involved.

For further information, please find below the link to their website: http://www.peopleinresearch.org/