Research for a Better Quality of Life with BAD.
Our involvement within research has one aim: to improve the care and support that people affected by BAD receive − now and in the future. We are doing this by working in partnership with other organisations to ensure high-quality research for BAD continues be a priority, and that patient and public involvement is integral to all the research we participate in.
Why do we need to support research?
BAD research is still significantly underfunded and has to date predominantly focused on why BAD occurs and methods of diagnosis. This makes it challenging for us as sufferers to self manage living and working with the condition. It also makes it very difficult for clinicians providing our care, to completely understand what excellent care looks like for people with BAD and how this can be improved. We need to help change this by supporting research programs which:
● Gain an understanding of the impact BAD has on quality of life
The findings from our patients Reported Outcome surveys and publications set out the true impact BAD continues to have on people’s lives post diagnosis. Patient reported symptoms and outcomes article
● Find better ways to treat the condition
We urgently need more research-based knowledge and expertise to help design and deliver the best possible care and support for people living with BAD
How will we grow our research activities effectively and efficiently?
● Developing research relationships with researchers & partnership organisations: We will continue to grow our portfolio of reputable health, education, charitable and industry partnership organisations with a common interest in BAD. This will enable us to identify our research priorities, secure funding and help us as a new Charity develop our research maturity and capabilities.
● Patient & Public Involvement Research Register: People with BAD are at the heart of what we do, so involving their experience, expertise and interest in research is vital. To help us do this we have created a patient and public involvement research registry.
● We asked people living with bile acid diarrhoea what they think the research priorities for BAD should be?: We have engaged with our followers to understand where they think the research priorities lie. People living with BAD identified these three areas as the top priorities.
improving clinical knowledge of managing the condition
improving treatment options
improving diagnosis timescales
Our research partnerships
We are looking to work with a wide range of organisations to increase funding, share knowledge and participate in BAD research.
If you are interested in working with us or are undertaking a BAD related research study and would like support with patient and public involvement representation from our BAD community then please get in touch by emailing firstname.lastname@example.org.
Meet our partners
Nottingham Trent University:
We are working in partnership to build upon the Patient Reported Outcomes from our on line surveys to further understand and quantify the impacts BAD has on quality of life.
University Hospital Coventry & Warwickshire:
We are working in partnership with UHCW to grow our patient and public involvement in all stages of NHS led research relating to BAD.
Registering your interest with us to be involved or participate in research
Before you sign up to our patient and public involvement and patient participation register it is important that you understand the differences between public and patient involvement and patient participation in research.
Patient and Public Involvement
Patient and public involvement in research (also known as PPI) is completely different to participating in a research study. When patients or public are involved in research they work alongside the researcher / research team to help shape what exactly it is that needs researching, how research is carried out, help run the study and how the results are shared and applied in practice. You can be involved in the whole process or just one part.
Further information is available in these links
Quick Guide: Public Information Pack (PIP) How to get involved in NHS, public health and social care research - https://www.invo.org.uk/wp-content/uploads/2019/04/PIP12019.pdf.
NIHR / Involve Website: What is Public Involvement in Research - https://www.invo.org.uk/find-out-more/what-is-public-involvement-in-research-2/
Participation in Research
Participating in research means you are the person taking part in the study eg. completing a questionnaire or taking a new drug in a clinical trial.
To help grow both patient and public involvement and patient participation in research we have created a register. The register will be held by BAD UK and is compliant with GDPR. We will never share your details with anyone, we will use the information you provide to contact you about opportunities we have become aware of that match an interest you have selected.
All opportunities we share with you will have been subject to appropriate checks to ensure legitimacy of the person or organisation requesting involvement or participation. BAD UK will be unable to advise you on whether or not you should become involved or participate, you will need to consider each opportunity carefully to ensure involvement or participation is the right thing for you.
If you have a BAD related study which you are looking for patient and public involvement or patient participation please contact us using the form below.