Healthcare comms: we must overcome the public's data-sharing doubts

One of the biggest comms challenges in healthcare is persuading the public that sharing their personal data will help to improve NHS services.

Healthcare comms: we must overcome the public's data-sharing doubts

Healthcare is changing at a fast pace: personalised medicines, wearable technologies and ‘organs on chips’ are some of the new advances that have the potential to make a huge impact on the health and wellbeing of the nation. But as exciting as these advances are, they all face a common problem: data.

The management and use of data is a challenge the NHS comes up against time and again, and until this is fixed, it seriously limits the positive impact of innovations and medical advances for two main reasons.

The first is collecting and managing the detail of the data. Having a nationalised health service should mean that the NHS is the biggest clinical trial in the world, with records for each person being collected through their lifetime. This should put the UK at the cutting edge of scientific advancement. But different data sets are not linked. For example, data on cancer patients is held separately from data on cardiovascular disease, and records created in A&E are not always shared with GPs.

This makes it difficult to turn the information collected into intelligence that researchers can learn from to make the most of new techniques and technologies.

The second challenge is that part of the reason it is difficult to link data (and this is where comms is important) is that people need to give their permission before their data can be shared between different parts of the NHS and with researchers. This was what the Government’s failed initiative was trying to achieve.

However, because of the way the programme was communicated to the public, and because people assume data sharing inside the NHS already happens, more than a million people opted out of allowing their data to be shared before the scheme was abandoned. Having such a high number of people opting out has had a significant impact and restric-ted research, particularly into rarer conditions.

There is a critical comms job that needs to be done in winning the hearts and minds of the public regarding the benefit of their health data being used in the NHS. An important part of this is engaging with people who have legitimate concerns about their personal data being shared. Engaging with this group so they don’t retrench is a very difficult job, but it must be tackled so the public can make an informed decision about what sharing their personal data will mean.

The use of data in the NHS, and the potential this has for catapulting scientific research forward, is a complex area. There is an important role for communicators to translate this complexity into something meaningful for the general public.

The NHS does not suffer from a lack of innovation and new technologies; what it struggles with is making data work as hard as it can to help us discover those innovations we should be adopting and those we should discontinue.

Communicators have a critical role in helping the health service take a great leap forward, achieving something that could be truly transformational.

Rachel Rowson is MD and head of health at MHP Communications

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