The field of digital health care is growing rapidly, but the patient viewpoint is often missing. A new coalition of charities and patient organisations aims to change all that
“It really is an issue of...making sure that patients are consulted throughout the policymaking process and that their priorities and interests are at the core of policy decisions.” Rachel Power, chief executive of the Patients Association
A group of organisations has come together to make sure that patients’ needs are represented in the development of policies relating to digital health care.
The Patient Coalition for AI, Data and Digital Tech in Health, which includes patient groups, royal colleges and health charities, aims to champion the patient perspective. Because digital health technology is developing so rapidly, the coalition is concerned that the patient viewpoint may be lost.
As an example, the new coalition cited the new database of GP records called the General Practice Data for Planning and Research (GPDPR), which has been postponed after patients complained that they had not been sufficiently consulted.
The main issues the coalition wants to tackle are:
Its objectives for the next year are to:
The coalition believes that not enough is being done to make sure that patients are included in policy discussions relating to the development, implementation and evaluation of digital health technologies. There is a risk, the coalition said, that the technologies “end up as something done ‘to’ patients rather than ‘with’ and ‘for’ them.”
As well as offering a forum for discussion, the coalition intends to influence government and NHS policy on the use of digital technology used in healthcare, putting patient interests at the forefront of media and policy discussions. The aim is to cultivate policy conditions enabling the UK to capitalise on new digital health technologies to the benefit of patients and the NHS.
The coalition is chaired by the Patients Association, and the 12 other members include charities such as Asthma UK and the Stroke Association, as well as the Royal College of Radiologists, the Royal College of Pathologists and the Patient Information Forum.
Rachel Power, chief executive of the Patients Association and chair of the coalition, said that members were “united by the common belief that more needs to be done to put patients at the heart of digital health.” She added: “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.”