National Care Service: data protection impact assessment

4. Consultation

Questions / Comments

4.1 Have you consulted with the ICO using the Article 36(4) form?

(please provide a link to it)

If the ICO has provided feedback, please include this.

Comments

Yes.

4.2 Do you need to hold a public consultation and if so has this taken place? What was the result?

Comments

Consultation on the National Care Service was launched in August 2021

The results of this consultation were published in Feb 2022

Responses were received from 1,291 respondents. The Consultation proposed the creation of a nationally consistent, integrated and accessible, electronic social care and health record which was strongly supported. There was also strong support for the proposal that information on health and care needs should be shared across services. Significantly, large majority of organisations agree that legislation should be used to require all care services and other relevant parties to provide data as specified by the National Care Service, including the requirement to meet common data standards and definitions.

There were concerns and risks raised however, for example around the ability of current IT systems to deliver and data protection and security.

4.3 Were there any Comments/feedback from the public consultation about privacy, information or data protection?

Comments

In response to the question on legislation being used to require all care services and other relevant parties to provide data as specified by the National Care Service, common comments in response included balancing the need for data in accordance with data protection legislation and protecting personal data from unnecessary usage and cyber security concerns. While the ethical use of personal data was a major theme, there were concerns raised around the practicalities of implementing a nationwide robust IT system.

Of those who disagreed with legislative changes, the main themes related to: current IT systems (limitations in the existing IT infrastructure, including a perceived lack of an interface between different IT systems), data protection and security and localisation.

Respondents were also asked if there are alternative approaches to address current gaps in social care data and information.

The main suggestions raised were in relation to data sharing across the National Care Service and the National Health Service and the need to ensure data follows the same data structure across both. Localisation was another key consideration for several respondents, including the availability of, and access to, services in remote areas and the need for data required to support people being as efficient as possible and not simply all data.

A majority of respondents who used the Easy Read format agreed that their information should be shared across the different services they use. When asked why, several stated that it would reduce the time and stress associated with re-sharing the same information with different service

providers and ultimately improve care. Some, however, highlighted that not all information should be shared and that consent should be gained from the supported person.

Specific comments from the consultation can be found on page 48 of the Consultation Analysis

Further work is taking place with service users to understand what data is important to them and to understand attitudes towards data sharing.