A recently completed international study involving researchers from Swansea University, the University of Edinburgh and University College London has looked at clinical records, research, and regulatory frameworks to find out why useful health data is often not used, and to explore the implications of this for citizens and society.

The Conversation reports that the researchers found that there are many reasons for the non-use of health data, and that it is strongly implicated in the deaths of many thousands of people and the potential waste of billions of pounds.

The researchers found the availability of NHS IT systems varied considerably between each location, often with a continuing reliance solely on paper records. There were limitations on data completeness and availability, and a lack of data sharing between departments too. This has knock on effects for clinical audits and research relying on the records to the disadvantage of patient wellbeing. At the patient level, this may mean tests need to be repeated and treatments delayed. It can also impact the ability of clinician to make an accurate diagnosis.

Although the majority of errors are corrected in good time or have little ill effect, it has been estimated that between forty and eighty thousand deaths a year in the US alone are due to misdiagnosis. There will be other reasons, but the non-use of clinical data is highly likely to be a major contributing factor. The high demand on staff to uphold standards of care as a priority, along with other service constraints and budget limitations, means problems persist in relation to clinical data collection and use.

The researchers also found that research carried out by pharmaceutical companies and universities was subject to various types of data non-use. Sometimes data were withheld intentionally, but in the majority of cases research is conducted with integrity and problems are inadvertent.

Pharmaceutical companies have been known to delay, or selectively use, clinical trial data for market advantage to the detriment of individuals and healthcare budgets. And even within academia the pressure to perform can influence work carried out and subsequently published. Furthermore, peer reviewed journals strongly favour publishing positive results, making it harder to share valid but negative or inconclusive findings. Altogether, this leads to publication bias.

The researchers found that problems in using data arise due to regulations for the proper use of data about people. These exist to safeguard patients, the public and professionals. Sometimes, however, these regulations may be implemented in an over-cautious manner, and/or there may be lengthy processes to follow before the data can be used. This may be due to unclear responsibilities or the fear of making a serious mistake.

Sometimes relying on the need for individual consent can limit studies about groups that are difficult to reach, as well as problems such as substance misuse, and any issues seen as sensitive. In the US, for example, people’s records with information on substance misuse have been withheld from research datasets because of privacy concerns. Without being able to access data on this difficult problem, research that would help individuals and their families may be delayed or abandoned. The problem of substance misuse is associated with over sixty thousand deaths a year in the US alone, vast costs to society and untold emotional damage.

The implications of data non-use are massive, but none of these problems stand in isolation. The researchers fully appreciate that there are often very good reasons that health data cannot be used to its best advantage, but there are also many areas where improvements can be made. Clearly, every step in data collection and use is crucial in order to avoid harm due to non-use.

It can been argued that data non-use is a greater risk to wellbeing than data misuse. The non-use of data is a global problem and one that can be difficult to quantify. Individuals have a role to play in supporting the safe use of data and taking part where they are able.