Why is it important?
Personalised care means making patients equal and active partners in their own care. It means that decision making is not based solely on the clinical effectiveness of treatments, but also on people’s personal goals and what matters to them.
In order for care to be personalised, decision-making has to be shared with patients by enabling patients to consider their options and discuss the risks, benefits and consequences of their treatment and care.
Unfortunately, in the latest Benchmarking, only 55% of patients agreed that they were involved in their care as much as they would like to be. This is in spite of nearly all IBD services agreeing that people with IBD are supported to be actively involved in management decisions about their care.
When it comes to shared decision-making, it’s important to:
- Explore fully any care or treatment options, along with their risks and benefits
- Discuss different choices available to the patient
- Reach a decision together with a healthcare professional
It’s also important to have people-centred conversations—something many patients don’t feel is taking place. In the 2023 IBD Patient Survey, only 24% of people with IBD agreed with the statement, “We discuss my wider life goals and priorities, as part of planning my care”.
National Voices has compiled information from 48 systematic reviews. This identified the most effective approaches to supporting shared decision-making including:
- Decision aids to help people consider the pros and cons of different options
- Question prompts to help people speak up during consultations
- Coaching and education to help patients become more engaged
- Access to medical records
Since the National Voices guidance on shared decision-making, resources have been created to support their recommendations. Crohn’s & Colitis UK’s Medicine Tool, for example, allows people with IBD to easily view the pros and cons of potential treatment options. The What’s Up With My Gut Patient Toolkit likewise provides people with lower GI symptoms a clear guideline of what to expect at appointments, what their diagnostic journey should look like, and question prompts to help them self-advocate during consultations. There have also been a number of case studies highlighting the benefits of secure digital access to medical records.