techUK calls for clarity as part of five principles for information sharing in health and social care
Health and social care needs to link and share more data, but with a practical and flexible consent model, according to the IT industry association techUK.
It is advocating these as two of five guiding principles for information sharing in health and social care in a newly published paper, which also includes 12 practical recommendations for industry and government to work together in the field.
Natalie Bateman, head of health and social care at techUK said: “Safe and effective sharing of information can help solve some of the biggest challenges faced by our health and social care services. Data sharing for primary and secondary use will enable providers to improve care outcomes within ever increasing pressures on already stretched resources.
“It’s vital we reach a consensus on what and how information is shared at every level, to achieve an optimal balance between personal privacy and security, and safe, cost-effective, evidence based health and care services.”
The paper says there is a clear case for sharing data to improve care, but that there is also a need to safeguard people's confidentiality in line with the law and best practice. There are also issues around aggregating data from care records for research, and many people are worried about the possible abuse of their data.
Subsequently, people have to understand and consent to the use of their records. It says that efforts to deal with this should take account of the five main principles:
- Clear, consistent and practical consent model(s) for citizens and health and care professionals.
- Linking and sharing data across the care continuum for citizen benefit.
- A clear and consistent approach to information governance and data security standards.
- Practical and usable information governance guidance that is proportionate to risk.
- Closer collaboration between the technology industry and government.
Among the recommendations are that there should be a nationwide effort to inform the public of how and why their data will be use, particularly for secondary uses, and to explain what measures are in place to safeguard their confidentiality.
- Placing explicit references to linkable information in roadmaps to Personalised Health and Care 2020 (the Government's framework for using data and technology in care) for all commissioning organisations.
- Central government bodies working with industry organisations such as techUK to develop a consistent approach to information governance standards.
- The development of appropriate information governance and data security standards that allow organisations to be permitted to do their own data linkage in a controlled environment.
- Introducing an agreed model of data controllership.