Privacy enhancing technologies: Adoption guide

Privacy enhancing technologies: Adoption guide
Centre for Data Ethics and Innovation 14 July 2021

• The CDEI has published a beta version of its PETs adoption guide, which is an interactive tool designed to aid decision-making around the use of PETs in data-driven projects.

Working with patients & the public to explain access to health data

Working with patients & the public to explain access to health data
Understanding Patient Data, HQIP 16 March 2021

• The Understanding Health Data Access (UHDA) project is a suite of short films and written resources designed to improve accessible, introductory information to the rules and processes that govern how health and care data can be shared for research, innovation, healthcare improvement and other uses beyond individual patient care. The information in the resources introduces some of the key legal requirements for data sharing in England and Wales.

Revisting Health Information Technology Ethical, Legal, and Social Issues and Evaluation: Telehealth/Telemedicine and COVID-19

Revisting Health Information Technology Ethical, Legal, and Social Issues and Evaluation: Telehealth/Telemedicine and COVID-19

International Journal of Medical Informatics 31 July 2020, 104239 https://doi.org/10.1016/j.ijmedinf.2020.104239

• Highlights
• Quality of care, access, consent, and privacy have been the primary telemedicine ELSI concerns.
• The pandemic illuminated additional issues and informatics needs.
• All these issues also apply to health information technologies in general.
• The scope of issues needs expanding; clinicians and organizations need updated ELSI guidelines.
• Evaluation that includes ELSI is necessary for decisions about health information technology.

Public deliberation in the use of health and care data

Public deliberation in the use of health and care data
OneLondon July 2020

• Summary of findings from OneLondon Citizens’ Summit held over two weekends in February and March 2020 to discuss, debate and deliberate some of the complex issues as to how the London health and care system should be joining-up and using people’s data to support individual care, to plan public services, and to enable research.
• This report will allow development of a single set of policies for joining up people’s health and care data in a way that is legitimate and continues to build trust and confidence. 

Guidance on AI and data protection from ICO

Guidance on AI and data protection
ICO 30 July 2020

• This guidance helps organisations mitigate the risks specifically arising from a data protection perspective, explaining how data protection principles apply to AI projects without losing sight of the benefits such projects can deliver.

Realising the value of healthcare data

Realising the value of health care data: a framework for the future
Ernst & Young 2019

• This report sets out a framework for the efficient and ethical use of NHS data and discusses its economic value to the NHS.
• It proposes two primary approaches to quantifying the value of data:
• A market-based approach, calculating the implied “per record” valuation multiples of comparable data assets or valuation multiples of companies with significant patient data assets
• An income-based approach, which quantifies value based on the economic benefit to be generated from the curated data set.
• "The health ecosystem is made up of multiple types of real-world data (patient-, population- and organisation-level data). Moving from siloed raw data to structured patient-level data generates unique data sets curated over time and captures longitudinal patient data combining long-term health or medical records with episodic periods of treatment. These can be analyses to generate insights and provide value to patients, providers, payers, pharmaceutical companies and the wider economy as a whole."

Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation

Creating the right framework to realise the benefits for patients and the NHS where data underpins innovation
DHSC 15 July 2019

• The purpose of this document is to provide an update on the development of government policy to:
• establish guiding principles and a framework to help the NHS realise benefits for patients and the public where the NHS shares data with researchers 
• establish a National Centre of Expertise to provide specialist advice and guidance to the NHS on agreements for use of data.
• See Mills & Reeve blog.

NHSX: new joint organisation for digital, data and technology

NHSX: new joint organisation for digital, data and technology
DHSC News 19 February 2019

• A new joint unit, NHSX, will be created to bring the benefits of modern technology to every patient and clinician. It will combine the best talent from government, the NHS and industry.
• The organisation will use experts in technology, digital, data and cyber security to deliver on the Health Secretary’s tech vision and the Long Term Plan for the NHS. The CEO will be accountable to the Health Secretary and chief executives of NHS England and NHS Improvement.
• NHSX’s responsibilities will include:

Code of conduct for data-driven health and care technology

Code of conduct for data-driven health and care technology
DHSC 5 September 2018 updated 19 February 2019

• The code of conduct contains a set of principles that set out what is expected from suppliers of data-driven (including Artificial Intelligence) technologies, and a set of commitments that outline what the government will do to support and encourage innovators in health and care.
• The aim of the code is to make it easier for our suppliers to understand what is needed from them, and to help health and care providers choose safe, effective, secure technology to improve the services they provide.
• See DHSC News item here.

Updates 19 February 2019:

National Data Guardian: a consultation on priorities

National Data Guardian: a consultation on priorities
National Data Guardian 18 February 2019

• Legislation has given the National Data Guardian for Health and Social Care (NDG) the ability to issue guidance about the processing of health and adult social care data. Public bodies, such as hospitals, GPs, care homes, planners and commissioners of services, will have to take note of guidance that is relevant to them. So will organisations such as private companies or charities which are delivering services for the NHS or publicly funded adult social care.
• Consultation to support decisions around the key priorities for the NDG will close on 22 March 2019.

Making NHS data work for everyone

Making NHS data work for everyone
Reform 11 December 2018

• This report looks at the access and use of NHS data by private sector companies for research or product and service development purposes.
• The private sector can provide skills and know-how to develop data-driven tools, while the NHS makes the data available alongside medical expertise - described as the 'value exchange'. However, there is a lack of clarity over what a fair value exchange looks like. Combined with the lack of national strategy on types of partnerships that could be developed, this has led to a messy patchwork on the ground.

Testing of loneliness questions in surveys

Testing of loneliness questions in surveys
Chapter 4 of National Measurement of Loneliness: 2018
ONS 5 December 2018

• This chapter gives an overview of ONS loneliness question testing, methodology and findings. Including:
• the questions and surveys that were used for testing
• the specific aims of the testing for each survey
• the statistical analysis used
• the main findings from testing
• our conclusions and recommendations

Corporate Retention and Disposal Schedule and Guidance

Corporate Retention and Disposal Schedule and Guidance v2.0
NHS England 26 Sept 2016 (reissued 23 May 2018)

• Advice and guidance to all NHS England staff with regards to the retention and disposal of records.
• Appendix 1 Corporate Records Retention & Disposal Quick Reference Guide 
• Appendix 2 Identifying the correct retention period for your records
• Appendix 3 Corporate Records Retention & Disposal Schedule

Data Security and Protection Toolkit

Data Security and Protection Toolkit
NHS Digital 15 May 2018

• The Data Security and Protection Toolkit is an online self-assessment tool that enables organisations to measure and publish their performance against the National Data Guardian's ten data security standards.
• All organisations that have access to NHS patient data and systems must use this toolkit to provide assurance that they are practising good data security and that personal information is handled correctly.