Bringing people closer to their data

This is the second article in our Data Series on BLM’s Health and Care Blog, examining the Department of Health and Social Care policy paper: “Data saves lives: reshaping health and social care with data” which sets out the Government’s vision of the part that data will play in the digital transformation of the NHS.

In this article we consider the Government’s stated vision to “deliver truly patient-centred care, which puts people before systems, so people will have better access to their personal health and care data and understand exactly how it is used.”

The Government’s particular aims in this regard are that anyone using health and adult social care services will have:

  • digital access to their health and care information (such as test results, medications, procedures and care plans) from across all parts of the system so that they can better understand and plan their care;
  • systems to easily manage appointments, refill medications, and speak with health and care staff;
  • the ability, if they want, to share additional data that they have collected to improve their wellbeing (such as sleep, food, exercise, and genome);
  • confidence that health and care staff have their up-to-date information, regardless of the care setting so that they won’t have to repeat details unnecessarily;
  • increased transparency about how the health and care system protects and uses their data.

The paper comments that responses to the Government’s National Data Strategy consultation showed widespread support for harnessing data for public benefit and that the recent report from the National Data Guardian had highlighted that the public did not feel that data had to be used only for its original purpose if it was bringing wider public benefit.

However, as the recent backlash against the General Practice Data for Planning and Research (GPDPR) programme has shown, there is significant public concern about the sharing of sensitive personal data and more than one million people have already opted out of sharing their information. In addition, doctors’ organisations voiced strong concerns that not enough patients knew about the scheme or that they could opt out. The planned introduction of the Scheme is currently on hold with the Government intending to carry out a “listening exercise” before announcing a new start date.

The Information Commissioner, Elizabeth Denham, has welcomed the decision to delay the launch of the scheme, saying that “The appropriate use of health data is an important part of health and care research and planning in England, and better sharing of health data could offer substantial benefits. However, it is clear that there remains considerable confusion regarding the scope and nature of the GPDPR, among both healthcare practitioners and the general public. This includes how data protection rights can be exercised in practice. It is sensible for NHS Digital to take more time to engage with its stakeholders, and consider the feedback it is receiving about its plan.”

In addition, while patients and those using care services can plainly expect to benefit from digital access to their health and care information and digital systems that will help them to manage their health and care, they can also be expected to have concerns about the security of their personal data and, as the paper acknowledges, “Anyone receiving care will only share their information with confidence if they feel like there are proper safeguards in place, and that those entrusted with their data will keep it safe.”

As an example of the safeguards that exist, the paper points to the National Data Guardian (NDG), who is described as “an independent champion for patients and the public when it comes to matters of their confidential health and care information.” The NDG is a statutory position and they have the power to issue official guidance about the processing of health and adult social care data in England.

It will nonetheless be a matter of concern to many patients and care service users that in the first quarter of this financial year, the ICO recorded that it had received a total of 607 reports concerning data security incidents in the health sector, significantly more than in any other single sector, accounting for more than 23% of the total number of reports for that period.

Therefore while patients and those who use care services will no doubt welcome the plans to harness the power of data and digital systems to deliver improvements in the provision of health and care, it would appear that work needs to be done if the Government is to deliver on the aim of providing patients and care service users with transparency and confidence in how the health and care system protects and uses their data.

Ewan Bright, Associate, BLM

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.