On 12th May 2026, the LifeArc Translational Science Summit convened 700 stakeholders from research, healthcare, industry, investment, policy and the patient community to focus on one shared challenge: how to turn scientific discovery into real‑world benefit for patients, faster.
Readable Research was there to hear about these opportunities with Marianne King and Kate Matheson from our team there to report back with lay summaries of the work presented, including this on data research. Read all our reports here >>
To understand more about diseases and therefore create new treatments, researchers require a lot of patient information. For example, researchers may wish to know whether certain genes (parts of the DNA passed down to us by our parents that determine our characteristics e.g. hair colour) are mutated in patients with the disease they are studying.
The more information that researchers have, the more they can understand about what causes the disease. For instance, if researchers collected information from 10,000 patients with a certain disease and found that they all had a gene mutation that people without the disease did not have, then they would know that this gene causes the disease and they can create a drug to correct the defects caused by this this gene or use gene therapy to target the gene directly. However, if researchers could only get information from five patients with a disease it would be much harder to see if there were any differences between these people and people without the disease, as everyone has natural differences in gene levels.
Why is this discussion important?
Although having lots of information about patients is important for researchers to understand more about certain diseases, some people decide not to share their information. This is of course their right, but it can prevent researchers from fully understanding diseases. It is therefore important to understand why people may decide not to share their information so that this can be addressed.
Who were the panel?
The panel was made of three speakers, each representing a different organisation: Yvonne Adebola represented “Use MY Data” which is a group of patients and carers that try to promote and educate about the use of health-related information; Nick Meade represented “Genetic Alliance UK” which is a charity that works with those affected by rare diseases; and Nicola Byrne, a doctor who advises the UK government about how health information should be used to help shape policies. Nicola Perrin, the leader of an organisation that supports research charities, led the discussion.
What was discussed?
The speakers took turns to share viewpoints as to why patients may decide not to share their information with researchers. Interestingly, it was noted that surveys show most patients are keen to share their information to aid research. However, some may be less willing to share certain information, such as alcohol use, for fear of judgement. Some patients have concerns as to how sharing their information will benefit them. For example, as it takes a long time for a drug to be approved for human use, someone may contribute to research by sharing health-related information but may die before a drug is approved. This means that participants must share information to improve the lives of others and not always themselves.
People may not wish to share their information as they do not know who will have access to their information or what their information will be used for. For instance, patients may fear their information will be sold or stolen to commit fraud. Additionally, patients might not want large companies that make money from selling medications to have access to their information, as they feel these companies care more about money than patients. Alternatively, people without an understanding of science may just be unaware of why a research study is taking place and what the benefits of it will be.
What does this mean going forward?
Speakers were asked what they thought could encourage patients to share their information. One way discussed involved teaching people why information is useful to researchers and why the research was being done. Additionally, educating patients about the legal requirements that researchers have when using their information, such as hiding identifiable features like names before publicising it, was thought to increase patient trust. Raising awareness about why large medical companies are involved in research, for example to fund the research or to produce drugs on a bigger scale, could also help to tackle negative views. However, it was believed to be important that if large medical companies are involved in research there needs to be an equal benefit to patients and the NHS as well as the company itself.
Furthermore, patients should feel that contributing to research by sharing information has a benefit for themselves. This could be as simple as ensuring people feel appreciated or by sharing results from research with participants as soon as possible, so they feel a difference is being made. It was thought that paying patients for sharing information could have negative effects, for instance people may feel pressured to sell their information rather than doing it because they want to improve theirs and other’s lives. However, indirect rewards could be an option, such as giving willing participants a discount on any treatment that becomes approved following a trial they took part in. It is also important to involve patients in research as early as possible, for example by holding meetings with patients to ask how they think studies should be carried out and what their concerns would be. This can help people feel heard and increase their trust in the research, therefore making them more likely to agree to share their information.
Overall, using patient’s information is beneficial for research to progress. It is important that patients are fully aware of what this involves, how they will benefit and what their views are on research to ensure good collaboration between patients and researchers.