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What is PPI?

Patient and Public Involvement (PPI) in research is defined as research being carried out “with” or “by” members of the public rather than “to”, “about” or “for” them. Traditionally patients and the public were not involved in research, however this has now changed and all of the major research funders, including the National Institute for Health Research (NIHR), and Bowel Research UK (the research partner of ACPGBI), expect to see patients as an integral part of any grant applications.

Patient and public involvement can take many forms. It might be being part of a focus group to help researchers come up with a research idea, to reviewing a lay summary or materials that will be used with patients in a study, or it may be more involved for example being a co-applicant on grant application and being on the management group running the study or sitting on a Steering Committee with oversight of a study or clinical trial. Whatever you are interested in, and however much time you can offer, there are opportunities out there for you. PPI members should get their travel expenses reimbursed, and depending on the project, they may be able to compensate you for your time, this is normally as per the NIHR INVOLVE guidelines.

There are many benefits to getting involved in research. You get to put your experiences to good use, and help researchers understand what it is like to live with an illness or long term condition. Depending on the study, it may be something that changes patient care for the better, helping others who are on a similar journey. You can also develop skills that you can use in your day to day life, for example you may be asked to help with an article for publication, or even to give a presentation at an event. There are endless opportunities, and a great sense of satisfaction. You may even make new friends!

If you want to find out more about getting involved in research you can look at the Patient and Research Together (PaRT) pages on the Bowel Research UK website.

The NIHR People in Research website lists various opportunities that are available to get involved in research.
 

ACPGBI and PPI

ACPGBI have led the way with patient involvement in research. In 2013 ACPBGI ran a Delphi survey (a Delphi involves several rounds of voting to come up with a consensus) to establish the most important research questions in colorectal surgery. Five hundred questions were submitted and twenty-five were taken forward to the ACPGBI research agenda. In 2015 prioritisation of the twenty-five research questions was undertaken with patient and public involvement, this included the ORACLE (BOwel Research PAtient ConsuLtation Exercise) group and a mass lay audience in June 2015 and the paper was published in 2016.

Following this the Delphi research programme linked clinicians and researchers with patients to develop the Delphi questions. One of the research groups that came out of this was the ENiGMA collaborative, looking at fistulating perianal Crohn’s disease.

ENiGMA held a number of PPI events, bringing together patients living with fistulating perianal Crohn’s disease, gastroenterologists, colorectal surgeons and radiologists. One of the pieces of work that has come out of this was the Core Outcome Set for fistulating perianal Crohn’s disease.
 

What is in a name?

You may notice that big trials and studies have a name, it’s normally an acronym of some of the key words (or letters) in the full study title. In research as well as wanting the study or trial to deliver good outcomes, you also want it to be effective. If people had to remember the full name it would make things much harder, so people get creative and come up with a catchy but memorable acronym, and often a great logo to go alongside it. Some are downright imaginative.

Here are some examples:

  • FUKNO – Falls of Unknown Origin – Are Morbidity and Mortality Predictable in Patients Presenting with Falls?
  • VOMIT – Validating the effect of Ondansetron and Mirtazapine In Treating hyperemesis gravidarum
  • STAR-TREC - Saving the rectum by active surveillance or TransAnal surgery after (chemo) Radiotherapy versus Total mesorectal excision for early Rectal Cancer
  • ROSSINI 2 – Reduction of Surgical Site Infection Using Several Novel Interventions
  • SUNRRISE – Single Use negative Press

Resources

Summary of The Pouch Report 2017 for patients and the public

28 July 2017
ACPGBI Publications

This report will help people considering pouch surgery to have open and honest discussions with their surgeons about their expectations and any personal concerns.