Principles for analysis and use of health data by ABPI members

Blog post from Dr Janet Valentine, ABPI Executive Director, Innovation and Research Policy on the principles for responsible health data analysis.

In 2022, the ABPI launched a set of principles for the analysis and use of health data, and today we have published a new easy-to-read handbook to help people use these principles and make sure they are living up to the highest standards in the ethical use of health data.

Health data refers to information about a person's well-being and medical history. It includes details like a person’s height, weight, age any medical conditions, and any treatments they may have had.

This type of data is really important, as it can help a doctor or other healthcare professional (HCP) understand a person’s health better, make informed decisions about their care, and find ways to improve treatments. Each bit of information is like part of a puzzle - when put together, they can help create a clearer picture of a person’s health and how best to improve it when required.

This data can also be important beyond personal health care. At a population level, health data is crucial to understanding diseases, developing new treatments, and enhancing healthcare services.

But how is this data used? And more importantly, how can we ensure it's used responsibly and ethically?

Last year, the ABPI worked in collaboration with its members and other key stakeholders, to develop a set of principles for the responsible use of health data. Let's dive into them:

1. Transparent purpose and risk management

Transparency is key. Researchers need to be upfront about why and how they plan to use your health data. This helps build trust and makes sure everyone involved knows what's going on. These researchers also want to hear from patients and the public to make sure the research benefits everyone.

2. Fair value and sustainability

Health data is a valuable resource. The principles state that there needs to be fair contractual agreements to access health data and that a fair value is returned to the system. This essentially means everyone using health data should give something back, and it should be fair for everyone, not just companies.

3. Patient and Public Involvement

Public and patient perspectives matter. The principles promote effective and meaningful involvement from patients and the public who should be part of any decision about how their data is used. They also say that researchers should make sure their work helps people from all walks of life, no matter their health conditions.

4. Sharing insights for the greater good

Sharing is a must. The principles outline that all insights generated through the use of health data should be shared. Researchers should work together and share what they learn, so everyone benefits.

5. Compliance and privacy

Using health data comes with rules to protect people’s privacy. The principles make sure researchers follow the rules and respect people’s right to control their data and choose if they want to be part of the research.

The ABPI principles set out what ABPI members will adhere to when analysing and using NHS health data, helping them use the data responsibly. They make sure all information is treated with respect and used to improve healthcare for all.

Read the our new handbook with the principles for analysis and use of health data by ABPI members in full here.