Patients considering organ transplants have very difficult decisions to make. The chances of an organ being suitable (and therefore being offered an organ at all) depend on a person's characteristics, such as their size and blood group, which can mean longer or shorter waiting times. Careful timing is paramount, so patients and their clinicians must decide carefully when to go on the list. Too soon and life expectancy may be shortened. Too late and the patient might become too ill for transplant.

Lung transplant patients are also asked to decide on certain donor characteristics, such as whether they have ever smoked or how old the donor is. The choices patients make about donors they would accept will certainly have an impact on the number of organs that could be offered to them.

Patients in these situations are ill, worried and stressed. They have to take in a lot of important information about their health often in quite a short space of time. In order to help patients with these incredibly difficult decisions, and to help them understand some of the statistical information given to them, we worked with data from NHS Blood & Transplant, to create a set of online risk communication tools. Healthcare professionals can sit with patient to look at personalised information on the potential risks & benefits for each individual patient in a clear and understandable way.

We worked with healthcare professionals and lung transplant patients at each of the UK's 5 adult lung transplant centres, and with kidney transplant patients across the UK. We spoke to ~20 clinicians to understand the assessment and listing process for transplantation. We observed ~50 clinical encounters between patients and doctors, specialist nurses and other healthcare professionals to understand how outcomes and risks are currently communicated to patients. We conducted in depth interviews with ~60 patients & families and asked about their experiences & what they wanted to know. Patients varied; some were not yet on the transplant list, some currently waiting for a transplant, others had had a transplant. We created versions of each tool, testing it with ~45 patients and ~20 clinicians in an iterative fashion, amending based on feedback and re-testing.

The final tools for lung and kidney patients are at:

https://lung.transplants.wintoncentre.uk

https://kidney.transplants.wintoncentre.uk

We hope that these sites provide a model for others to use - and we have made the code available for others to use. We adapted the code to make it generic: able to take any Cox proportional hazards model with competing risks adjustment, so that it can be used to display risk and benefit other health conditions. We used clear cell kidney carcinoma as an example.

- Kidney cancer app code at https://github.com/wintoncentre/kcp.git.