Delivering a vision of joined-up health and care
Making the right information available to health and care professionals at the right time can save lives and improve treatment and care.
As well as supporting care for individuals, shared information can help to provide the best possible health and wellbeing outcomes for our communities, and reduce health inequalities.
OneLondon supports this vision of joined-up health and care. We are working closely with Londoners to deliver this vision in a way that meets public expectations, and builds trust and confidence.
Meeting public expectations for using health and care data
This Conversation with Londoners includes the world’s largest public deliberation on the use of health and care data, which took place in February and March 2020. 100 Londoners – reflective of the city’s diverse population – came together in a Citizens’ Summit to form detailed recommendations and conditions, which are now being used to shape policy for London.
The recommendations set out by Londoners means that, for the first time, there is clear instruction from the public to policymakers and health and care leaders, for how data should be used.
In line with these public expectations, OneLondon is progressing the safe and secure join-up of health and care information. This includes:
- Connecting health and care providers across London to the London Care Record – a single shared record that provides an accurate, complete picture of a person’s health and care from over time and across organisations for the purposes of individual care
- Starting to configure a London data services layer so that non-identifiable information can be joined-up and used to support planning, improvement, and research
- Planning a pan-London approach to personal health records so that people can access and contribute to their own information
This ensures that the OneLondon collaborative can continue to deliver benefits for the system and - most importantly - for Londoners, in relation to integrated care and population health outcomes.
In this new phase, OneLondon continues to be led by the five local Integrated Care Systems (ICSs) and the London Ambulance Service, with support from NHS England (London region), the Greater London Authority, and London's three Academic Health Science Networks (AHSNs).
A data sharing framework was drafted in July 2020 to support consistent join-up, accountability and safeguarding of information in London. This was in direct response to recommendations formed by Londoners at the Citizens' Summit.
The data sharing framework summarises the legal principles and good practice guidelines placed on providers across London’s five health and care partnerships for wider data sharing for the purposes of individual care, planning and improvement, and research. The framework is underpinned by data protection legislation and the Common Law Duty of Confidentiality.
The framework was developed and agreed by information governance leads across London’s five health and care partnerships, as part of the London IG Steering Group, in line with public expectations. It was then updated in March 2021 following consultation with multiple stakeholder groups, including:
- Local information governance groups and forums
- London Strategic Information Governance Networks (SIGNs) Forum
- Health and care professionals
- National Data Guardian
- Information Commissioner’s Office
The London IG Steering Group is continuing to support the implementation of the data sharing framework as we work towards the consistent join-up and use of health and care data across London, as mandated by the public.
All materials, stimulus and video presentations from the Citizens' Summit are publicly available to download and share. Visit onelondon.online/citizenssummit
The Coronavirus outbreak highlighted the urgent need to join-up health and care data to provide real-time information to support individual care, public health, and to protect the lives of Londoners.
Thanks to the recommendations set out by participants involved in the Citizens’ Summit, for the first time we had clear instruction from the public as to how we should be using health and care data in a legitimate and trustworthy way.
Where the join-up of information across London was accelerated from March 2020 in response to COVID-19, we can be confident that this is what citizens expect. As a result, we have been able to better manage COVID-19 incidence across London, and support and protect the lives of some of our most vulnerable citizens.
- The join-up of local authority and GP data in north central London identified and prioritised support for vulnerable patients with poorly controlled long-term conditions
- A dataset drawn from GP, hospital, and community data sources in north east and north west London identified vulnerable patients who required immediate intervention, and flagged those at high risk
- Research using de-personalised (non-identifiable) data about inner city residents from two south London hospitals found that people from Black, South Asian and minority ethnic groups were more likely to get COVID-19 and were at greater risk of worse outcomes
OneLondon’s public deliberation takes place over two weekends in February and March. Following three days of discussion, debate and deliberation, the final day sees Londoners present their recommendations for how health and care information should be used.
Leaders from across London’s health and care system are in attendance to receive the recommendations, including representation from the Mayor’s Office, and London's Regional Medical Director.
Deliberative engagement is a unique approach to involving people in decision-making and influencing policy. It differs from other forms of engagement in that it is about bringing a ‘mini public’ together over a period of multiple days, and informing and educating them about very complex topics and issues, and then facilitating them to consider and deliberate the challenges relating to these in some depth enabling the group to reach an informed and considered view.
OneLondon’s deliberative engagement will involve a group of 100 Londoners, reflective of the city's diverse population. Through a robust four-day process of debate and deliberation, this ‘mini public’ will form a set of recommendations as to how Londoners’ health and care information should be used.
An Engagement Oversight Group is formed to help ensure that the aims of OneLondon’s public deliberation are met. This expert advisory group includes specialists in health and care data, and engagement. Together with OneLondon, Ipsos MORI and The King’s Fund, they will help to ensure that the process is robust, rigorous, and accessible.
The aim of this expert engagement is to discuss and explore the risks and benefits around the uses of health and care information and the real-life examples that frame these. Insight gathered from the workshops, along with findings from the research report and community engagement will help to inform the design of the public deliberation.
Community engagement takes place to help fill some of the gaps in current understanding. Focus groups and conversations with a range of seldom heard and vulnerable groups helps to understand their expectations and attitudes towards uses of health and care data.
Time is spent at homeless shelters, places of worship and community centres, listening to the views of - amongst others - non-English speakers, the LGBTQ+ community, survivors of domestic abuse, and those living with sensitive conditions such as HIV and AIDs.
Independent research, undertaken to help inform OneLondon’s public engagement, is published.
The research looks at what is currently known about people’s expectations and attitudes towards to the use of health and care data, and the gaps in our understanding.
The report is well received by the health and care system, with positive feedback from National Data Guardian, Dame Fiona Caldicott, Matthew Gould, CEO of NHSx, and Theo Blackwell, Chief Digital Officer for London.
Read the report here.
Key findings of this research include:
- People expect their information to be available to clinicians to support their individual care. Indeed, they are surprised that this is not routinely the case
- We don’t know people’s expectations as to how information should be used for purposes beyond their individual care, e.g. for research, planning and improving services
- There is very little evidence which looks at the views of seldom heard and vulnerable groups, e.g. non-English speakers, LGBTQ+ community, the homeless, traveller communities, survivors of domestic abuse, people living with rare diseases or sensitive conditions such as HIV and AIDS
- To date, research has focussed on the benefits and concerns of using this information. But we don’t know how people would weigh these up and what trade-offs are agreeable to them. This is key if we are to understand the expectations of the public in the real-world context of our health and care system
As a result of this research, OneLondon commits to a deeper, more meaningful conversation with Londoners, one which will surface people's expectations and explore what trade-offs are agreeable to meet these in a real-life scenario. This will be supported through a process of public deliberation.
- Is open and transparent to enable a meaningful conversation amongst citizens and healthcare professionals
- Is as inclusive as possible to reflect the wonderfully diverse voices across London
- Develops trust and confidence by seeking to understand Londoner’s expectations around the uses of health and care data
- Takes forward Londoner’s recommendations to enable an agreed approach to the use of health and care data