The Patient Coalition for AI, Data and Digital Tech in Health

As the first of its kind, the Patient Coalition for AI, Data and Digital Tech in Health unites a truly diverse group of patient groups, charities, Royal Colleges and industry with a focus on championing the patient perspective in digital health.

The Coalition will work to provide insights and influence the policymaking process to progress this agenda by: identifying gaps in the evidence and conducting research to offer novel insights on patient priorities in digital health; developing policy recommendations; and engaging with Government stakeholders and other policymakers to advocate and campaign for system improvements.

London 15th September 2021: 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 DigWhite older woman smiling, sitting in an armchair, using a tabletital Tech in Health is the first coalition to unite such a diverse range of stakeholders from across the health policy landscape in order to champion the patient perspective in this field. As digital tech 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 in order to allow time for sufficient consultation. There is a need to ensure these kinds of mistakes do not reoccur as we accelerate digital health technology.

Involving patients in policy

Currently, 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. In fact, there is limited understanding of what patients actually 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.

Coalition agenda

Issues Coalition members have committed to tackling include:Patient Coalition for AI, Data and Digital Tech in Health logo

  • 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.”

Coalition structure

The Patients Association serves as Chair and Lexington serves as the secretariat of the Patient Coalition for AI, Data and Digital Tech in health, which receives funding through sponsorship provided by Boehringer Ingelheim. The current members of the Coalition are:

  • Asthma UK
  • Boehringer Ingelheim
  • British Lung Foundation
  • British Heart Foundation
  • Diabetes UK
  • Fight for Sight
  • Parkinson’s UK
  • Patient Information Forum
  • Patient Safety Learning
  • The Patients Association
  • Royal College of Pathologists
  • Royal College of Radiologists
  • Stroke Association

First report

The Coalition published its first report earlier this year, Digital Health during the Covid-19 Pandemic: Learning Lessons to Maintain Momentum. It highlights that uptake of digital health tech during the pandemic has been limited, while patient experience of tools including video conferencing has been mixed. Patients strongly believe in the value of digital health but there are still significant concerns about using it, particularly around data collection and sharing.

The report concludes that the UK must build on progress made to digitise the NHS during the pandemic rather than revert to pre-Covid service models, and draw on good practice examples that have helped facilitate service improvements, such as virtual self-referral and clinician communication support.

The Coalition recommends that the Government should:

  1. Ensure digital policy reflects patient priorities
  2. Involve patients in the policymaking process
  3. Educate people about the value of digital health technology
  4. Make digital health technology accessible to all
  5. Ensure that regulations for the collection, sharing and use of patient data are clear and consistently applied.

The Coalition recommends that the NHS should:

  1. Examine the public experience of digital health technology during the pandemic
  2. Ensure patients have a choice
  3. Give patients more time and control over their health and care
  4. Reassure patients that their data is safe
  5. Continue to strengthen and publicise digital assurance.