BDRF funds first ever patient Chief Investigator

For the first time in BDRF’s history, and we believe in the field of bowel disease research, we have awarded a research grant to a study with a patient at the helm as Chief Investigator.

Our most recent round of grants, collaboratively funded by the Ileostomy and Internal Pouch Association and Kingston Trust CIO aims to improve the quality of life for people living with an ileostomy.

Not a study with a patient as co-investigator, or a project based on patient consultation – we’ve already done both those things. This time, a person with an ileostomy will lead a research study aiming to improve life for other people with stomas. A team of medical professionals will work on a project designed and delivered by someone who is a bowel disease patient.

So what is the project about? The clue might be in its title: the PAPooSE Study.

If you haven’t worked it out from that, the PAPooSE stands for: “PregnAncy Outcomes & Experience in Patients with IleoStomiEs”

Unfortunately, surgery for many bowel conditions & disorders, including IBD and cancer surgery, can sometimes affect a woman’s ability to get pregnant. In IBD in particular, the disease often strikes people in their late teens, ’20s or early ’30s – just at the time many are considering starting a family.

Research has shown that birth rates are considerably lower in women with IBD than the rest of the population. We think this is to do with poor general knowledge of pregnancy-related issues in IBD, which leads to fears and anxieties that discourage many from getting pregnant.

If people need to have a stoma after surgery, they are naturally even more concerned about how this will be affected during pregnancy. You immediately wonder if there are potential complications that may specifically affect a stoma during pregnancy and after birth – from dealing with a baby bump with a stoma on top, to what’s happening underneath.

PAPooSE aims to find out what patients experience when wanting to start a family, being pregnant with a stoma, and after delivery, so that future patients have much better information to help them make decisions.

Who could better understand these challenges, worries and anxieties than a person who has an ileostomy herself? The woman leading this research, Sue Blackwell, has had an ileostomy for 14 years and undergone surgery 13 times.

We are absolutely delighted and proud to have funded a patient chief investigator for the first time. There is a phrase now common in medical research circles – Patient and Public Involvement in Research (or PPI – but no not that kind!). It is a pre-requisite to winning funding, where researchers must demonstrate patients have been consulted in the design of a study.

Perhaps it is now time time for a new concept – where ‘involvement’ is replaced by ‘leadership’!

Commenting on the grant award, Sue said:

“Pregnancy following stoma surgery can be a scary prospect, with worries about what will happen to your stoma during and after your pregnancy, as well as all the usual worries that every pregnant woman faces. This study will enable us to provide much needed information to patients with an ileostomy who are considering starting a family.

I’m absolutely delighted that BDRF have had the vision to approve a grant led by a patient, a colorectal first! If it wasn’t for the ACPGBI Delphi Games, which BDRF funded, I would never have known that patients could be involved in research, let alone think that one day I might be putting in a grant application of my own. The hard work starts now, but I am really looking forward to the challenge.” 

ACPGBI President Brendan Moran said:

“ACPGBI has long been ahead of the curve when it comes to involving patients in research. By breaking down the barriers between patient & surgeon, we’ve made sure our research agenda has the needs of patients at its very heart every step of the way.

Few, if any, professional associations can boast such a proud record in this area – and to see us break new ground with the first ever colorectal research study led by a patient Chief Investigator is an immensely proud moment. Huge congratulations are in order to Sue Blackwell, her team and the Research & Audit Committee”

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