Getting Involved in Research

How I Became Involved in Research

June 2018 will see the 40th anniversary of my diagnosis with Crohn’s Disease (although the symptoms had been apparent since the previous Autumn). Apart from early surgery, for a perforated bowel, I spent the next 30 years clear of any major flare-ups and was not greatly affected by the disease.

That all changed in 2009 when the drugs stopped working and surgery beckoned. A year later I underwent an ileostomy at St.Thomas’ Hospital (subsequently reversed). The whole experience was life changing. At that point I started to become aware of social media and the active IBD communities out there on the web. I learnt much more about IBD and read about other patient’s experiences.

After surgery in 2010 I went into remission although a number of other conditions appeared. I was keen to understand what caused them and if anything in my medical history would point to their origins. I started to read research papers on these conditions and re-visit old medical records.

I had already contributed to research by donating blood and tissue samples from my ileostomy and had taken part in a genetics study but, having been in remission since 2011, the other studies I came across needed patients with active disease. That didn’t stop me from helping but it was now from the other side of the fence. I reviewed questionnaires and information sheets for research studies to make sure they were “patient friendly”.

In 2017 I took early retirement which gave me the opportunity to devote more time to helping the IBD cause. Towards the end of last year I was asked by a fellow Crohn’s patient whether I would be interested in helping Bowel & Cancer Research. After an initial meeting I realised this was an environment I could contribute to and I have subsequently become the Public and Patient Involvement Lead (PPI) for the Motilent study, using enhanced processing of MRI scans for the management of, initially, Crohn’s Disease. Crohn’s was chosen as small bowel MRIs are commonly used to monitor the disease and it has a significant patient base.

(The National Institute for Health Research (NIHR) defines public involvement in research as “research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them. This includes, for example, working with research funders to prioritise research, offering advice as members of a project steering group, commenting on and developing research materials and undertaking interviews with research participants.”)

I happened to mention that I had carried out a very simplistic calculation of the time I had lost during the last 10 years due to Crohns’ and related issues (including attending outpatient appointments, undergoing procedures or sitting in a hospital bed as an in-patient). The diagram below illustrates that the period mid-2012/13 was particularly intense. The time lost equated to just under 8%. The project team liked the idea of preparing a properly researched study into the cost burdens experienced by patients and so the “Costing Crohn’s” study was born. Luckily several team members are experienced in organising such studies and the requirements for producing a document that can undergo peer review. It was time to learn from the experts!

The first step was to recruit a small working group of patients to review the approach we are proposing to take and suggest the areas we need to consider. We held our first meeting at Bowel & Cancer Research HQ in February.

As a precursor to the meeting I produced the diagram below based on my own, personal experience. It gave us a starting point for our discussion. By the end of the session the diagram had grown many more branches! A big thanks to our participants.

Our next step is to put together the first questionnaire for Crohn’s patients to complete. We’ve taken the decision to produce a series of short questionnaires rather than one long one. The first one will be on the subject of the procedures respondees have undergone in the last 12 months.

The results of our study will be enhanced by the number of responses we can get back. Please look out, later ths year, for links to the “Costing Crohn’s” study on Facebook, Twitter and other social media platforms. We will be needing you help.

Twitter account – @costingcrohns #costingcrohns

 

Meeting People

THAT WAS THEN….

Up until 2010 I had only ever met 2 other people with Crohn’s Disease – a work colleague in 1992 and a neighbour a couple of years later. I had deliberately avoided joining any patient groups. Why would I want to go out of my way to mix with a load of “sick people”?

After initial surgery I had spent long periods in remission and never had a flare-up bad enough to be hospitalised. My only contact with Planet IBD was when I saw a consultant, sometimes six monthly, yearly or longer. My only knowledge of what it was like to live with Crohn’s was from personal experience.

Then in 2010, with surgery beckoning, I started using SoMe and suddenly I found the online IBD Community and “met” lots of Crohn’s patients, albeit in cyberspace. I then went on to meet a couple of them for a coffee.

….BUT THIS IS NOW

I recently had the privilege of taking part in a patient workshop. So what happens when a small group of Crohn’s patients get together, not virtually, but sitting round a table to discuss the cost of the disease to the patient? (and not forgetting the valuable contribution of one patient on speaker phone)? A number of things :

The barriers and taboos of “normal” conversation go out of the window. No subject is off limits. Any embarrassment disappears.

It quickly becomes obvious that whilst we share many of the same experiences, we all have a unique take on the disease and the way we cope with it.

The atmosphere is one of empathy and not judgement.

My overriding thought, having listened to everyone’s story, was what an amazing thing the human body is. The pain and heartache it can inflict upon us but also its ability to survive against all the odds. Even more remarkable is the human spirit and how it copes with a failing body and the mental anguish that a chronic disease can bring with it.

I also learnt some very specific things such as what a Hickman line is or why some patients have a Portacath or what it is like trying to claim support payments.

At the end of the workshop one of the non-Crohn’s participants said that until you do this sort of exercise you cannot understand how all encompassing living with Crohn’s is or, for that matter, any chronic disease.

I’m looking forward to the follow-up workshop later in the year.

…as an added bonus we were given a guided tour around the Bowel & Cancer Research laboratories by one of their very enthusiastic pharmacologists who explained some of the research projects underway

Bowel & Cancer Research Laboratory
Tissue samples undergoing tests