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What questions do you think research should answer about organ donation and transplantation?

We are running a survey for anyone affected by organ donation and transplantation to let us know what you think are the most important questions that should be answered by research. We want to hear from patients, their loved ones, carers, and living donors to understand what organ donation and transplantation research should focus on to improve patient outcomes.

Your ideas will help us to identify the research needed to help improve access, care and treatment for people with organ failure and transplant patients. We want to know your questions; no matter how large or small, they are all important.

We are running this survey to support NHS Blood and Transplant (NHSBT) to identify their research priorities for the next round of funding from the National Institute for Health and Care Research (NIHR). We also want to generate questions from patients and the public to co-design with researchers.

Complete the survey

The survey closes on Friday 4th July

Why do we want to hear from you?

Patient and public experiences should be at the heart of deciding what research should focus on, to ensure it answers the questions that truly matter to patients and leads to more relevant outcomes.

Patients can identify areas where more research is needed and help researchers to understand what will be most meaningful to them.

Why is this research important?

Organ donation is an act of great generosity and provides a gift that will extend and transform someone's life.

Going through organ failure and transplantation can have a huge impact, both physically and mentally, on patients and their loved ones. This impact does not end once someone has received their new organ, as they take medication which can cause side-effects, face increased risks of infection, and deal with concerns around rejection of the new organ.

There is also an imbalance between the number of people on the transplant waiting list (estimated to be around 7,500) and the number of organs available for transplantation. In 2024, many people needed to wait a long time to get a transplant and over 415 people died while on the waiting list (NHSBT).

How can you help?

Think about what you would like to see answered by research into organ donation and transplantation. In your own words and using your own experiences, tell us what is important to you by completing our survey.

You can help someone else to complete the survey, and you can complete the survey again on your own behalf.

What kind of topics should you think about?

We want to hear your views, informed by the experiences of yourself and others. You may want to think about things like:

• Access to transplant units
• Preparing for and recovering from a transplant
• Treatment and care before and after a transplant
• Availability of suitable organs
• Emotional and mental health support
• Medication and managing side effects
• The experience of being on the waiting list
• Support for carers, families, and donor families
• Inequalities in access to transplant services
• Living well after a transplant
• Capability of GPs to care for transplant patients after initial recovery

Don't feel you have to stick to these topics, we want to hear the questions you think should be answered by research, whatever they may be!

What will we do with the answers to this survey?

We will group the answers into key topics (for example, mental health support or medication side-effects). This will help us to understand which issues people feel are most important for research.

We will then share these topics at a workshop on 30th July with NHSBT, as well as doctors, scientists, and researchers, who have completed their own version of this survey. In the workshop, both groups will compare their ideas and discuss the findings together.

What will happen with your information?

Part of the survey will ask about demographic information, such as your age and ethnicity. This information will be used to ensure we have answers from a diverse range of people.

Your personal information will be kept private and confidential, and will only be stored for the duration of this research exercise, after which they will be deleted. No names or organisations will be mentioned in any published results.

Information will not be shared with clinical teams, and they will not know what you have said in your response.

If you have any concerns about the use of your personal information, please contact us at info@ukodtrn.org

What happens next?

Next, we will send out a second survey. This will include a short list of questions from patients and the public that have not already been answered by research. We will ask you to pick the questions you think are most important or urgent - both for you personally and for the wider community. Then, you will be asked to choose your top ten.

After collecting all the responses, we will then run some workshops with patients and members of the public to help us put them in order of importance and urgency.

What's the end goal?

We will work with researchers to turn your top ten questions into research applications and apply for funding.

We will also share the results of the survey on our website.