Public communication: Lesson’s learned from the UK Health and Social Care Information Centre

In many ways, as has been highlighted in this chapter, the United Kingdom has a strong policy toward openness and transparency about data and data access. Nonetheless, and perhaps because of this openness, it also has experienced difficulties that provide important lessons-leamed about the necessity of strong public communications that must accompany openness and transparency initiatives.

Strategic plans, public consultation and the launch of care.data

In the United Kingdom, the health and care system in England has undergone a major reorganisation over the last two years with a number of new organisations established from April 2013. The Department of Health’s role is now as steward of the new system and to set the overall strategic direction for health, public health and adult social care in England. In particular from April 2013 the Health and Care Information Centre (HSCIC) was established with new powers and responsibilities in relation to data. In common with a number of other government departments the Department of Health has a transparency board, the Health and Social Care Transparency Panel (HSCTP) whose role it is to give advice on making data more transparent and available.

There was a public consultation on the information strategy for health including the approach to developing information infrastructure for health and social care. This public consultation took place between October 2010 and January 2011. The consultation received 742 responses from all stakeholder groups, for example from clinicians and the voluntary sector. It was a broad response that led to the development and publication of the strategy in May 2012 by the Department of Health entitled “The Power of Information: Putting All of Us in Control of the Health Information We Need”. This report sets out a ten-year vision for an information system that collects clinical and patient-level data once that can then be used, reused and shared in accordance with strict rules to protect patient privacy. The goal is to share information within the NHS and Social Care that supports delivering care, that also provides, securely, data for research and statistics, and that enables patients to access their own records to empower them and to help them to manage long-term conditions and to monitor their own care.

The strategy includes data linkage for research purposes, where data are linked and then anonymised or pseudonymised before they are provided to researchers under clear information governance requirements. The strategy aims toward data that will be more effective for planning because it will be timelier (closer to real-time). The objective is to increase the sharing and use of data including to collect data once at the point of care and to create a national repository for the data. The programme is called care.data.

Care.data will provide a modern data system for the NHS, to provide patient's with access to their own records, to provide services and data for research, to support policy bodies and research organisations e.g. King’s Fund and the Nuffield Trust. The data held within HSCIC from care.data will be at the level of patients or health care events and be linkable across different data sources, pseudonymised and then made available for use subject to strict information governance rules. Better IT systems will enable data that help the NHS to manage demographic pressures on health and social care budgets by providing the data needed to make health care more efficient.

England is in the process of developing this new approach. At present, there is a lot of health data available, particularly held within the Health and Social Care Information Centre (HSCIC) which is the main custodian of England's health data. HSCIC offers a data linkage service to approved applicants. Approved applicants pay a fee for the linkage service which covers the cost of conducting the linkages. While HSCIC was undertaking linkages in the past, it was in September 2012 that the services were announced and certain data linkages became undertaken on a routine basis, such as a monthly linkage of mental health patient data to hospital episode statistics. Applicants for data linkage services must explain the data they want to use and how they intend to use it. The HSCIC also provides data linkage services to the Clinical Practice Research Datalink (CPRD) which began providing services in March 2013. CPRD is an advisory service that guides researchers preparing research proposals for approval including getting access to linked patient-level data (pseudonymised).

A review of health data confidentiality protections and information governance was conducted by Dame Fiona Caldicott and published in 2013. This was undertaken, in part, to address concerns that clinicians and health and care professionals were reluctant to share data even where it would be for the benefit or safety of patients, because of concerns about respecting legal requirements. The review looked at risks of both sharing and not sharing data. The review found that most patients expect the sharing of data for their personal benefit, such as for better care but there is nervousness about the use of confidential data by government.

 
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