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 unites a diverse range of stakeholders to champion the patient perspective in this field.
PIF has joined the coalition alongside members The British Heart Foundation, Diabetes UK, Parkinson's UK and The Stroke Association.
PIF director Sophie Randall said: "PIF has joined this important coalition to ensure patients' need are at the heart of digital healthcare.
"It is vital e-health solutions meet the digital health literacy needs of the population and are easy to use, understand and accessible to all."
Putting patient perspectives at the heart of digital health
Currently, not enough is being done to ensure 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.
Rachel Power, chief executive of the Patients Association which chairs the coalition, 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.”
A campaigning coalition
In addition to providing a forum for discussion, the coalition will act as an independent campaigner 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 coalition aims 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. It will:
- Examine health inequalities and call for the prioritisation of access to digital health
- Share best patient-centric practice in digital health
- Ensure 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
It will campaign for policies including:
- 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 patients feel confident 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
Current coalition members 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
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.
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.