Cochrane reviews in inflammatory bowel disease: experiences from a patient author

Session: 

Oral session: Patient or healthcare consumers involvement and shared decision-making (3)

Date: 

Sunday 16 September 2018 - 14:00 to 14:20

Location: 

Ochil 2

All authors in correct order:

Gordon M1, Baines P2, Iheozor-Ejifor Z3, Kaur L3
1 Supervisor, United Kingdom
2 Patient, United Kingdom
3 Author, United Kingdom
Presenting author and contact person

Presenting author:

Patricia Anne Baines

Contact person:

Lakhbir Kaur
Abstract text
Background:
Inflammatory bowel disease (IBD) is a chronic, relapsing condition, therefore it has a lifelong impact on all aspects of daily life for patients. The National Institute for Health Research (NIHR) has recently funded a UK-based team to perform a series of key Cochrane Reviews in the area. Underpinning the bidding and project strategic planning was full integration of patients and service users. One key area of this has been the inclusion of IBD patients as authors on key reviews.

Objectives:
A patient author with no previous health research experience will present their experiences in each of the key stages of involvement and offer their opinions on where future research needs to focus.

Method:
We made a recruitment call via Crohn's & Colitis UK, local service user groups and social media, asking for patients with IBD to become involved in research. Once our patient authors responded and were recruited, they were involved in team meetings, reviewing papers, data extraction planning, guidance on the focus for discussion and dissemination and, finally, writing plain language summaries.

We conducted a review of the use of probiotics in ulcerative colitis and selected 11 randomised controlled trials for inclusion. The individual studies varied in their interventions and the number of groups included.

Patient reflection:
Participating in this review made me feel as though my experiences and questions as a patient had been acknowledged and included. I feel this could not have been fully integrated into formalised research studies and could add another angle to the reviews while also representing the patient. Areas of interest to me were why certain patient groups were selected over others and were not more specific, how patients can access the treatment (for example, is this treatment available on prescription; what is the cost of it?) and also, given that IBD is not a fully understood disease, can studies involving different probiotics be compared? The process has been interesting and beneficial to me.

Key messages:
Involving service users allows research to be better orientated to what patients require rather than the arbitrary aims of researchers. Furthermore, listening and responding to patients allows better dissemination of the results of studies and patients are more likely to take on the advice from the findings.

Relevance to patients and consumers: 

I believe that the initiative will improve a patient-focused outcome as it gives the researchers some insight into the day-to-day living with IBD and what may be helpful to the patient Two themes that have been identified with a patient involvement is transparency and accessibility. For patients it is important to have transparency highlighted in studies such as who is funding the study and what the background of the researchers involved in the study are. The second theme, accessibility, focuses on how easy it is for patients to obtain the medication that is being studied, if it is difficult then one can argue, is it worth researching?