Helping clinicians understand what matters most to patients

Identifying the need

Across NHS Highland, people are referred for different bowel tests, mainly colonoscopy and colon capsule endoscopy (CCE). These tests can feel very different from each other. Some involve hospital appointments and significant preparation, while others can potentially be done at home using a tiny camera inside a capsule. 

There was no clear evidence about what patients themselves valued most when asked to choose between these options. Were they more concerned about discomfort, waiting times, or was getting the most accurate result the thing that mattered most?

The challenge on the ground

Even though both tests were already available, the decision-making process was not always clear or consistent. Patients described very different experiences. 

One interviewee said: “I wouldn’t say there wasn’t any sort of choice. I was at the doctor's and he’d suggested a particular route.” 

Another seemed frustrated about the lack of information: “I think the GP was very much, in terms of the capsule, he certainly didn’t give me a great deal of information about it” 

Patients wanted clearer guidance and more balanced information to help them make choices that fit their needs and preferences.

How we responded

NHS Highland Charity awarded £2,150 to support a study that would listen directly to patients and understand their priorities. The research team invited patients who were waiting for either a colonoscopy or CCE to take part in a telephone interview. Participants were asked simple, open-ended questions, such as: 

• What information, if any, were you given to help make the decision to have the test you are waiting for? 
• When choosing a bowel test, what aspects of the test, if any, did you take into consideration? 

This approach helped the team capture a wide range of views. Some patients valued simplicity and comfort. Others were willing to tolerate more discomfort if it meant the most accurate results. 

One patient put it plainly: “I think if you are worried about your symptoms and what might be causing them, you want to have answers as soon as possible.”

The change we achieved

Twelve patients took part in the study, sharing honest and thoughtful reflections. This gave researchers a clear picture of what matters most to people undergoing bowel investigations: 

1. Getting an accurate result was the number one priority - patients consistently said the most important thing was ruling out cancer or identifying any problems early. “To be sure that if something was there, it would definitely be picked up.”
2. Waiting times made a big difference - people spoke about anxiety and frustration when waiting for procedures.
3. Pain and discomfort mattered - some patients were worried about discomfort during colonoscopy, while others were concerned about the preparation step (e.g. bowel cleansing) regardless of the test type.
4. Invasiveness influenced choices - patients who were nervous about invasive procedures may be more open to the idea of capsule endoscopy.
5. Decision-making was mixed - some felt well supported by healthcare staff; others felt they needed more information before making a choice. 

The findings were strong enough to be peer-reviewed and published in BMJ Open Gastroenterology (2025). Publication means the learning is now available to clinicians and researchers across the UK and beyond.