Speech I made on an amendment to ensure health data considered appropriately.
The privacy and security of patient data must be paramount. Health and care services need users to disclose personal and sensitive data and this is only possible if islanders trust that such information will remain confidential and is subject to inherent safeguards.
However, HSC believes it must be made clear that good sharing of information, when sharing is appropriate, is as important as maintaining confidentiality. There is no contradiction between ensuring services rigorously protect the confidentiality of personal information whilst also proactively sharing information to optimise the care delivered.
Now all that should not be news to anyone here given this is taken directly from our policy letter, the Partnership of Purpose; Transforming Bailiwick Health and Care, which this Assembly approved in December last year.
In the absence of overarching data, it is difficult to take a strategic overview of what’s really happening across the health and care system and this hinders data-driven decision making.
Proposition 12 sets out those persons and entities to whom the Director may disclose information in accordance with existing gateways. Those included in the list, or rather those that are not, demonstrates the problem we have. There is no existing gateway that enables data sharing between ESS and HSC for example.
Why can’t we obtain data from ESS for the purpose of running a screening or vaccination programme, but we can obtain data from GPs, at a price? That is nonsense, particularly as the former is more likely to have the most up to date information for the purpose.
To date the debate on data protection has been dominated by equivalence. That’s fine and we have a law in place which achieves that and will go live shortly. What we are talking about here in no way undermines the integrity of the GDPR Law. Government is often criticised, including by me, for creating more red tape and barriers to getting things done. This is an opportunity to demonstrate how we are prepared to break down barriers to enable good things to happen.
The EU GDPR provides a limited ability for Member States to legislate locally on certain discrete matters, including the use of health data which are set out in paragraphs 52-54.
And basically state that an organisation does not have to rely on consent and can collect and use health data if the processing is necessary for the purposes of preventive or occupational medicine, medical diagnosis, provision of health or social care or treatment, management of health or social care systems and services, under a contract with a health professional or another person subject to professional secrecy under law. Additionally, consent is not required if the processing is necessary in the public interest for public health reasons, or if the organisation can argue that the processing is necessary for scientific research.
And, under the local law, under Schedule 2, paragraphs 10 and 11, it states that the processing of data is lawful if for a health and social care purpose or for public health reasons.
From the Committee for Health & Social Care’s perspective the omission of any reference to health data in this policy letter therefore needs to be addressed. This is not a problem that has popped up in the GDPR it has been an issue under the old law after all. But that doesn’t make it right. Government has to date been almost exclusively focused on data security at the expense of data sharing. It feels like it has been put on the too difficult pile. BUT We literally can’t afford to do so any longer and this amendment seeks to start the ball rolling.
As I said at the beginning, it should be of no surprise that CHSC is laying this amendment given how it is completely aligned to our policy letter.
Resolution 9 states, ‘To agree that the processing of health and care data should be premised on the equally important dual functions of protecting the integrity and confidentiality of such data and its sharing, where in the interests of the service user or the delivery of a public health function, and to direct the Committee for Health & Social Care and the Committee for Home Affairs to explore legal or practical mechanisms to achieve this’.
Resolution 15 of Art XII, Billet d’État No XXIV of 2017 states, ‘To affirm that the States, in all its policy decisions, should consider the impact of those decisions on health and wellbeing, and make use of any opportunities to improve health or reduce health inequalities, across all government policies’.
That is the purpose of this amendment.