Dr Amy Simpson
Senior Researcher, Genetic Alliance UK
Remote healthcare has an exciting place in the future of rare disease care. But first, we must listen to patients and learn from their experiences during the pandemic.
Over the past two years, in an effort to reduce transmission of COVID-19, many parts of the NHS pivoted to deliver services remotely. Phone triage, helplines, appointments and family meetings via video conferencing were used in an effort to provide continuity of care to those living with rare conditions.
Providing care virtually has implications for the way individuals experience and manage their conditions. It is important now to pause and reflect in order to harness and sustain the successes from the pandemic.
Remote healthcare provides opportunities
Published and anecdotal evidence point to benefits of remote healthcare for patients with rare conditions. It can offset the costs and challenges of travelling long distances to frequent appointments. This is especially true for those with disabilities who find travelling tiring. It can allow access to specialist advice in a timely way, which can be vital during acute illness and emergencies.
We need more evidence about the use and impact of remote healthcare for those with the most complex conditions and for those still seeking a diagnosis.
Embedding virtual practices into healthcare also offers an opportunity to address priorities of the UK Rare Diseases Framework by connecting professionals with one another more readily, improving coordination of care.
Understanding the risks
The limitations of remote healthcare must be realised. Face to face contact is still important in many cases, for example, for those receiving a new diagnosis when sensitivity and support is key. We need more evidence about the use and impact of remote healthcare for those with the most complex conditions and for those still seeking a diagnosis.
Furthermore, we must be careful not to leave anyone behind, including those without the resources and/or digital literacy to engage – the diversity of the community should be acknowledged. Patients with rare conditions are already often underserved compared to those with common conditions, It is paramount that by using remote healthcare. We do not increase this gap.
What is next for remote healthcare?
Remote options have an exciting role to play in the future of rare disease care. Collaboration is key – patient choice needs to be the deciding factor in how care is delivered, along with service users having an involvement in the design and evaluation from the outset.
