F16: Protecting Patients' Health Data - Creating a Health Data Charter and Sovereign Health Data Trust

Motion as passed by conference

Submitted by: 15 members

Mover: Lord Clement-Jones (Lords Spokesperson for Culture, Media and Sport).

Summation: Baroness Brinton (Lords Spokesperson for Health, Wellbeing and Care).

Conference believes that:

1. Data collection and sharing are important and have been instrumental in advancing medical capabilities and improving population health.
2. Individuals have the right to understand how and why their health data is being used.
3. Understanding and transparency is key to public trust and confidence in data sharing initiatives.
4. The wealth of data held by the NHS should be used for the benefit of the health service and improving people's health only.
5. Health data should never be shared for marketing or insurance purposes.

Conference calls for the creation of a Health Data Charter that will:

1. Set out the fundamental principles and responsibilities for assessing whether a data sharing partnership is in the interest of the public and the NHS.
2. Aim to ensure trust in the Government's handling of health data, by laying out stringent principles that will help protect people's privacy and their data from exploitation.
3. Lay out ways to retain and protect the value of the nation's health data.

Conference further calls for the creation of a Sovereign Health Data Trust that will:

1. Comprise a diverse, independent and balanced board of experts, clinicians and patient representatives and will be responsible for overseeing the implementation and observance of the Charter.
2. Have continuous oversight of all health data and will not only have the power to grant access but also the power to recall or restrict an organisation's access if it has reason to believe that the data is not being used for public or patient benefit.
3. Be designed in such a way as to render it interoperable with the European Health Data Space in technical and in semantic terms, including through the promotion of Findable, Accessible, Interoperable and Reusable (FAIR) data principles within the NHS.

Conference endorses the Liberal Democrats' proposed Health Data Charter as follows:

1. Access to health data must be for public and patient benefit - this benefit will be defined by the Sovereign Health Data Trust with input from external experts and the public; the Trust will also determine whether an organisation can access the data for such purposes and can rescind access at any time.
2. No data shall be shared with an organisation without complete transparency - all health data contracts entered into by a public body must be published publicly and in a timely manner, as should detailed minutes for all meetings, including meetings of the Sovereign Health Data Trust; details of the organisation requesting use of the data should also be published, such as its sources of funding, ownership and intentions.
3. All health data collection and sharing initiatives must be preceded by public consultation, involvement and awareness - public trust is key to any sharing of health data; this trust must be built through awareness and consultation with the public, ensuring a solid understanding of the benefits of sharing health data with external organisations and bodies.
4. The value of all health data must be retained by the NHS - people's health data belongs to them and any value derived from it should be for everyone's benefit; when data is used to develop new medicines or treatments, by research organisations or commercial enterprises, a share of the income generated should be invested back into the healthcare system and the NHS.
5. All health data must be held anonymously and accessed through a Trusted Research Environment - this Environment will be overseen by the Trust and will ensure that no data is handed over to an organisation indefinitely and therefore outside the governance of the Trust; it will also mean that personal data can be retrieved should a person wish to opt out at any time, and access granted to an external organisation withdrawn, should it be found they are not using the data as agreed.
6. Consent processes must include plain language terms, and formats accessible to disabled people and people with low literacy.

Applicability: England only.