Get involved in research

Health research in organ donation and transplantation is the study of how we can help people who need new organs (like kidneys, hearts, or lungs) to live longer and healthier lives. Scientists and doctors look at how to improve the process of donating organs, how to match donors with people in need, how to make sure their body accepts the new organ, and more.

Here's why this research is important

1. Understanding need

Research can help us to understand how many people need organ transplants and why. This information has an important role in finding ways to prevent people from needing an organ transplant, and to increase the number of organs being donated.

2. Improving transplantation procedures

Researchers can study new ways to perform transplants safely and effectively. This includes developing better surgical techniques and learning ways of preventing the recipient's body from rejecting a new organ.

3. Matching donors to recipients

Research helps us to figure out the best ways to match donated organs with the right recipients. This means more successful transplants and better chances for patients to live a healthy life.

4. Encouraging organ donation

By studying the reasons that people may hesitate to donate their organs in the event of their death, researchers can help to create campaigns that encourage more people to sign up as donors. This can increase the availability of organs for those in need and save lives.

5. Advancing medical knowledge

Ongoing research in organ donation and transplantation leads to discoveries that improve the way patients are cared for, helping them to live longer and healthier lives after receiving a transplant.

Research in organ donation and transplantation is crucial because it saves lives, helps to improve the chances of successful transplants, and makes our communities healthier and stronger!

Patient and Public Involvement and Engagement (PPIE) means including patients, carers, families, living donors, donor families, and interested public in research about organ donation and transplantation. It is a reciprocal partnership between researchers and those who have experienced organ donation and transplantation first-hand to shape their research. 

Here's why PPIE is important

1. First-hand understanding

Patients can provide unique perspectives that researchers may not have. Your experiences as a patient can highlight important health concerns.

2. Improved health outcomes

Research that includes patient and public voices is often more effective because it ensures that studies focus on what matters most to service users, leading to more relevant treatments and solutions.

3. Building trust

When researchers partner with patients and the public, it builds trust within the community, helping people to feel more involved and valued in the health care process.

4. Better research quality

Including diverse voices can improve the design and implementation of the research, making it more accessible and reliable.

1. Participate in focus groups

Join discussions where you can share your thoughts on health topics, research ideas, or healthcare services. Your feedback can help shape research priorities. 

2. Serve on advisory boards

Some researchers form committees that include patient and public members. These boards help to guide research projects from start to finish. 

3. Attend workshops and events

Participate in training sessions or community events about health research. This is a great way to meet researchers and learn more about their work. 

4. Complete surveys

Share your opinions through surveys about healthcare experiences, treatment preferences, or research topics that matter to you. 

5. Be a research partner 

Some projects invite patients to be co-researchers, actively contributing to the development and execution of research studies. 

6. Review research documents

Provide feedback on documents used in a study to ensure they are easy to understand and have all the relevant information that participants might need.

Anyone in the UK with experience, skills and knowledge from interest or lived experience of organ donation and transplantation can get involved! You don't need special qualifications - just a willingness to share your experiences and ideas. 

You may be someone with experience of:

• Organ failure
• Organ transplantation
• Caring for someone who has experienced organ failure or transplantation
• Living organ donation
• Being the family of an organ donor 
• Being passionate about organ donation and transplantation

Whatever your experience is, your voice matters.