The Richmond Group of Charities want the NHS, and the research and care organisations that support it, to be able to use health and social care data to understand people’s conditions, experiences and needs. This insight can, and should, be used to make sure that people receive the best possible care and support.
But we also believe that this should only be done with the highest standards of governance and safeguards and in a way that respects an individual’s decisions about whether and how they want their data shared.
As a priority, people need to be able to feel confident that their data will be kept safe. We know that people’s concerns around privacy and data security is a significant, and understandable, barrier to trusting the system with their health and social care data. People also need to feel confident that their data is being used appropriately. We believe organisations need to make it clear why they want to use health and/or social care data and how that benefits the people it is collected from.
We also want people to have improved access to their own data so that they are in a better position to manage their own health needs and know more about which services are appropriate for them. People from more vulnerable groups, such as people affected by dementia and those with reduced mental capacity, are likely to need additional help and support with this.
We therefore support the fact that Dame Fiona Caldicott and her team have undertaken this review to look at the security measures in place to protect health and social care data and devise a model that gives people the opportunity to decide whether and how their data is shared.
In particular, we support the report’s recommendation to improve how patients, healthcare professionals and the wider public are engaged on this issue. We hope the Department of Health starts this work immediately by proactively seeking out the views of these groups during their public consultation on Dame Fiona’s report.
We also recognise that there is a role for the Richmond Group to play in helping to engage the public in health and social care data issues by sharing examples of where using health and social care data has directly benefitted the people we support who are living with long term conditions; and by highlighting the risks that can come from missing opportunities to share data or learn from it.
There is still more we would like to know, however, about the impact that Dame Fiona’s recommendations will have. This includes how they will affect the data sharing preferences that people have already registered as well as patient surveys and the way health and social care data could be used for service improvement. With others in the sector, the Richmond Group has also been calling for it to be made clearer who is responsible for ensuring that data is kept safe and used appropriately. We hope to see these details soon.
15 million people in England currently live with a long-term health condition. Although our healthcare system often provides good care, many people experience uncoordinated care and unacceptable variation in quality and outcomes. We want people with long-term conditions to live well and experience the best possible care and support. But we will not be able to deliver the necessary improvements to treatment, care and support unless those working in and with the health and social care system make better use of data and the people living with long-term conditions are able to access data that is relevant to them.
As a group of charities who works with and supports people with long term conditions every day, we strive to represent the opinions of our beneficiaries in relation to data. Now that Dame Fiona Caldicott’s review has completed, we hope that we will be able to continue to inform thinking on data security and people’s right to decide whether and how their data is shared by responding to the Department of Health’s consultation and engaging with those tasked to take her recommendations forward.