On Tuesday 22nd November 2022, Vox Scotland’s Development Officer Paula Fraser gave evidence to the Scottish Parliament’s Health, Social Care, and Sport Committee. The Committee took evidence from a range of stakeholders, including Vox Scotland, regarding data and information sharing for the planned National Care Service.
Paula amplified the views of you, our members, at this Committee meeting – ensuring your concerns and feedback were heard by decision makers. Thank you to all members who shared their perspectives.
There were a range of concerns shared by members, including worries about confidentiality, stigma, human rights, informed consent, patient access to records, and transparency.
Here are three of the key areas Paula highlighted at the Committee Meeting:
Mental Health Records
There were significant concerns about data sharing between the NHS and Social Care and the potential for this to extend to mental health records, which are currently closed records. Many members were explicit in their stance that mental health records should remain closed. However, some members highlighted potential benefits of sharing data, including having a joined-up approach with good communication and consistency in records and care. If records were to be shared, this could prevent people having to repeatedly relay their experiences and medical histories – something that can be re-traumatising.
Members were keen for there to be explicit informed consent for different sets of data being shared and to be fully informed of the reasons for, and process of, sharing of any personal information. It was suggested alternative options could be presented such as sharing a short summary or ‘bullet point overview’ of mental health records, rather than full documentation.
Funding and Infrastructure
For members who felt data sharing would be beneficial, concerns were raised about the levels of funding and IT system changes and upgrades that would be required. Keeping records safe and secure was a key priority, and the infrastructure needs to be in place to support this.