Coalition formed to represent patient interests in digital health

Not enough is being done to ensure that patient voices are included in policymaking around digital health, says a new patient organisation in the UK, which aims to set that situation right.

The Patient Coalition for AI, Data and Digital Tech in Health has brought together members of patient organisations, medical colleges and health charities to tackle issues such as ensuring equitable access to digital health services.

Members include the Patients Association – which is acting as chair of the group – as well as the British Heart Foundation, Diabetes UK, Parkinson's UK, the Royal College of Pathologists and Royal College of Radiologists. It is being sponsored by Boehringer Ingelheim.

There's no question that the adoption of digital health has accelerated since the start of the pandemic, fulfilling a valuable role during lockdown, but that speed has been accompanied by a risk that patient perspectives may be lost.

The coalition says that one clear example of this was the UK government's ill-fated General Practice Data for Planning and Research (GPDPR) initiative, which aims to have the health records of millions of NHS patients uploaded into a database that could be used for research purposes – including by third parties – and care planning.

There has been pushback against the GPDPR, focusing in particular on the lack of public consultation on the proposals, and has been placed on hold after more than a million people opted out of the scheme in a month.

"There is a need to ensure these kinds of mistakes do not reoccur as we accelerate digital health technology," according to the coalition, which argues that there is currently limited understanding of what patients actually want from digital health.

In fact, a survey carried out on behalf of the new organisation found that while around 81% of respondents made use of telephone services during the pandemic, just one in five used video consultations and a third accessed services using mobile phone apps.

Of those who used telephone consultation services, only 28% thought it improved their care and/or experience, according to the report, with even worse scores for video (10%) and mobile apps (2%).

"The reason why all these fantastic partners from across the health landscape have agreed to join this coalition is because we are all united by the common belief that more needs to be done to put patients at the heart of digital health," said Rachel Power, chief executive of the Patients Association.

"It really is an issue of collaboration and making sure that patients are consulted throughout the policymaking process and that their priorities and interests are at the core of policy decisions," she added.

The priorities for the coalition in the coming months is to ensure all patients have access to digital health technology, regardless of where they are in the country, providing them with a choice of how they receive care, and making sure any technologies in use are approved by the NHS.

It also wants to make sure that there are clear regulations for the collection, sharing and use of patient data.