Coalition to represent patient interests in digital health policy
A new coalition with members from Royal Colleges, health charities and patient groups has come together to ensure the interests of patients are at the heart of the development of policy in digital health technology.
The Patient Coalition for AI, Data and Digital Tech in Health coalition unites a diverse range of stakeholders from across the health policy landscape to champion the patient perspective in this field. As digital technology continues to evolve rapidly and policymakers work hard to adapt, there is a risk that the patient perspective may be lost. Most recently this was seen with the General Practice Data for Planning and Research, a new database of GP records which has subsequently been postponed allowing time for sufficient consultation. There is a need to ensure these kinds of mistakes do not reoccur as we accelerate digital health technology.
The coalition feels not enough is being done to ensure that patients are included in the evolving policy discussions surrounding the development, implementation, or evaluation of digital health technologies in the UK, and that there is limited understanding of what patients want from digital health. The danger is that these technologies end up as something done ‘to’ patients rather than ‘with’ and ‘for’ them.
In addition to providing a forum for discussion, this coalition will act as an independent campaigning coalition, taking forward joint pieces of work and engaging actively to help influence government and NHS policy on the use of digital technology in healthcare. The goal will be to ensure patient interests are at the forefront of ongoing media and policy discussions surrounding digital health tech and being incorporated into the policymaking process. The goal is to cultivate the necessary policy conditions to enable the UK to capitalise on new digital health technologies to the benefit of patients and the NHS.
Issues coalition members have committed to tackling include:
- Examining health inequalities and calling for the prioritisation of access to digital health
- Sharing best patient-centric practice in digital health
- Ensuring the patient perspective is embedded in policy and government strategies.
The coalition’s objectives for the next year are to:
- Promote understanding of the patient experience of digital health
- Ensure patients receive the support needed to access digital health tech
- Inform policymakers on what good practice looks like.
The coalition will continue to engage proactively with policymakers, health agencies and others to help inform digital health policy. It will campaign for policies such as:
- Ensuring all patients have access to digital health technology, regardless of where they are in the country
- Providing patients with the choice of how they receive care, and empowering them to make that decision for themselves
- Prioritising digital assurance so that patients feel confident when engaging with digital health technologies that they are using products that have been approved by the NHS
- Ensuring there are clear regulations for the collection, sharing and use of patient data.
Rachel Power, chief executive of the Patients Association, chair of the Patient Coalition for AI, Data and Digital Tech in Health, said: “We are delighted to be launching this vital new coalition particularly after such a challenging year. 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. 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.”
Uday Bose, country managing director and head of human pharma at Boehringer Ingelheim UK & Ireland, said: “This coalition is a fantastic example of a cross sector group bringing their diverse perspectives and experience to focus on the patient perspective in digital health. Our priority at Boehringer Ingelheim is and always has been patient centricity and we are very supportive, as a key member and sponsor of the coalition, of the ambition that digital health technology is shaped and developed together with the patient to ensure critical aspects of design, access and building confidence are considered.”