Four lessons the pandemic has taught us about health data

Data has played a critical role during the pandemic. It’s helped to assess the impact of new treatments, track trends in the quality of care, and identify the needs of the most vulnerable. The government publishing data about the number of cases, hospitalisations and deaths has also been an important way for the media and public to track the impact of COVID-19.

As the UK slowly emerges from the pandemic, data can play a similarly significant role. This includes understanding longstanding issues (like rising levels of mental health conditions, and long waiting times for care), more immediate priorities (like the rollout of Integrated Care Systems), or even how the NHS in England compares with other health care systems internationally.

At the Health Foundation, we have been on a journey since 2014 to use data to improve health and care. However, the COVID-19 pandemic has been a steep learning curve for everyone. We want to be sure that we learn from the successes and failures in how data has been used during the pandemic and take advantage of the unique opportunities ahead to improve health and care for all. 

Here are my four lessons from the pandemic with regards to health data: 

1. Don’t let missing data render some experiences invisible

Despite all the efforts to ensure datasets are representative of the whole population, the experiences of many groups remain missing from the data we collect about people’s health. This affects the ability of the NHS and wider public health system to respond to everyone’s needs.

To give one example, we know that people with learning disabilities are generally at increased risk from infectious disease. But four months into the pandemic, there was still very little data on how they had been affected by COVID-19, as Chris Hatton explains. The situation steadily improved, but these information gaps made it much harder to marshal action for this group. Similar problems around missing data have affected many other groups in our society during the pandemic. 

This raises a profound challenge for anyone interested in the use of health data. Missing data is not just a technical issue. We are increasingly reliant on data collected through digital systems, and the ability of people to use these systems is shaped by deep practical, economic, political and social considerations. We need to understand these impacts so we can design systems to work for everyone. 

2. Include public and patient involvement as standard in health data projects 

There are many reasons to involve the public and patients in health data projects. It gives the public confidence that their information is being used according to their wishes, and it can also make for a better end product.

Examples abound. The COVID-19 contact tracing app went on to make a valuable contribution to managing the pandemic. However, by any reckoning, it had a rocky start. This was in part because of public concern about how the data would be used, and whether the app was the right solution. These problems might have been avoided with more public involvement.

It’s an approach that doesn’t always come naturally to health data people. But we’ve been pushing ourselves to develop our own practice in this area at the Health Foundation, and are already reaping the rewards.