"GDPR Says Yes"

Think Local Act Personal (TLAP) has published a report entitled Data for people: Principles and priorities for the collection, storage, sharing and use of data around care and support. This sets out a range of ambitions, principles and concerns about data, as expressed by people who draw on care and support.

Most people want data to be shared so that they can “say it once” to those who are supporting them – but they want to have control over who sees what data. The report sets out the concerns voiced by people, with 15 principles for data sharing and six priority areas for action.

Concerns:

• Limited information about current data collection

• People’s experiences of their personal data being collected, stored, shared and used

• Information gleaned from the media about changes to data collection, storage, sharing and usage at national or local level

• Their aspirations for their future care and support, and their understandings of how data could support the delivery of improved care and support

• Concerns about the loss of control when their individual data is aggregated across communities for monitoring and planning, or across the wider population to inform research, development and policy-making.

Principles

1. Approaches to data should be co-produced with people who draw on care and support, and family and friend carers

2. The primary purpose of data in care and support must be to improve people’s lives, in line with established policy including the wellbeing principle

3. The data we collect must be used to drive equity and inclusion

4. The data collected around individuals’ care and support should relate to the things that matter to them

5. People who draw on care and support must define the outcomes against which care and support provision is assessed

6. Datasets on care and support must be inclusive of everyone who draws on care and support, of family and friend carers and of the range of different models of care.

7. Personal stories and statements and other qualitative data should be valued alongside quantitative data.

8. Data about individuals’ care and support belongs to them – people need choice and control over how their data is collected, used and shared, even when it is shared anonymously, and options to opt out of data sharing if they choose

9. Individuals’ data should not be sold for profit or used to generate revenue without their explicit consent

10. People should have access to their own data, in formats that are accessible and appropriate for them

11. Family and friend carers should be able to access data around the people to whom they provide care and support, where consent has been given and with appropriate safeguards

12. People should be able to verify and update their own data, using simple mechanisms

13. Data collection, storage, sharing and use should be regularly audited to ensure that systems and processes are of high quality, to eliminate any bias or inequity, and to ensure all protocols are being followed

14. Organisations using care and support data should be transparent in their activities and accountable for its use

15. People must have access to mechanisms for recourse if their data is mishandled, falsified, or shared inappropriately.

Priorities for action

1. Bringing all stakeholders with an interest in data around care and support together to identify areas of mutual interest and concern and any areas where aspirations or approaches may be in conflict, and to work towards resolutions.

2. Developing a standing mechanism at national level to support co-production of approaches to data, collection, storage, sharing and use and in monitoring the implementation of data policies. This should encompass approaches to individual level data; organisational/system data; and data to inform strategic planning.

3. Developing better metrics for assessing the impact of care and support interventions – starting with co-producing new outcome measures with people who draw on care and support.

4. Introducing a uniform approach to consent for care and support data, and communicating people’s rights clearly.

5. Establishing clear protocols for keeping individual data up to date, and around how data to inform strategic planning and commissioning can be kept current.

6. Negotiating workable compromises around data sharing that balance people’s right to privacy with the need to gather high-quality data to support service development, improvement and innovation.