The most in-depth research ever into what the public think about patient records being used by commercial organisations has revealed that the majority are in favour as long as there is a clear public benefit and appropriate safeguards are in place.
A major new report into what the public think about patient records being used by commercial organisations has revealed that the majority are in favour as long as there is a clear public benefit and appropriate safeguards are in place.
The report, prepared by Ipsos, for the Wellcome Trust, details the findings from sixteen qualitative workshops in total across Great Britain between September and October 2015. Ipsos also interviewed a representative sample of 2,017 across Great Britain between 30 November and 11 December 2015.
The findings show that there is a low awareness about the uses of health data within the NHS, as well as how commercial organisations can use the data. While there is a core group of people who do not want this health data shared at all, many people find that sharing health data with commercial organisations is acceptable if there is a clear public benefit for this sharing. A clear public benefit is often seen to be, for example, something with a clearly medical aim, such as developing treatments and, in some cases, improving health services.
The report also makes several recommendations, including:
if commercial sharing is on the table for health data, it needs to be made clear how the data will be used, and how key risks, such as data security and anonymity, will be mitigated;
safeguards should be put in place up-front and designed to enhance the public control of the data, such as opt-outs, where possible, and limiting the incentives for commercial organisations to mis-use the data;
there is a need to identify and communicate clear public benefits of involving commercial organisations so that the public are reassurd that the profit motives will not override the public benefits;
there is a need to further engage the public on these issues to ensure that there is an informed social debate about the uses of health data. This may need work to inform the public about how statistics work, what happens with their data and how data becomes combined into datasets. This will put the public in a better position for how to assess the risks and benefits of data sharing; and
codes of conduct need to give special consideration to the needs and fears of different sections of the public and how their views might differ.