What is Telehealth?

If you were to ask a room full of people what telehealth is, you would get a lot of different answers. There would be a lot overlap, but it would be difficult to find two people who have the same definition. This is one of the challenges of the “digital health” space, a lot of these terms evolve over time, so you can have many definitions. We also tend to use terms interchangeably, in this case telemedicine is used a lot with telehealth. There is no one right answer or definition to describe telehealth. For the sake of this research, we describe it as interactive consultations between a medical/healthcare professional and a patient or family member/caregiver. So this could include a phone or video call with someone from your CF team.

Who we are and what are we doing?

During the pandemic, the Cork Centre for CF (3CF) quickly setup a telehealth service to ensure that PwCF and their families attending the Cork adult service could continue to receive care at a time when everyone was being forced to self-isolate. At the time, we asked PwCF who were using our telehealth service to answer some questionnaires. At the time we found that overall people were happy with using telehealth and there are instances where it can be really helpful. But it could never replace face-to-face care. After the pandemic, we found that we were now providing a “hybrid model” where some PwCF would attend some reviews online via telehealth, and others preferred to never use telehealth. This got us questioning, “What is the best way to use telehealth as part of a CF service”, and this is where this research journey supported by CFI began. This research is led by Dr Tamara Vagg who is a Digital Health researcher specialising in CF, and Prof Barry Plant who is the director of the Cork adult CF service. The overall aim or goal of this work was to learn how CF units are using telehealth as part of their services, and what are the best practices in using telehealth for CF.

How are we doing it?

Our research journey began in 2021 where we began collaborating with the Prof Sarath Ranganathan and his team from the CF paediatric service at the Royal Children's Hospital Melbourne. Australia as a country have been using telehealth as part of their healthcare system for a long time to support a lot of rural and isolated communities. For CF, units across Australia have been using this tool for a long time and is offered routinely in most CF units. Together we learnt that the telehealth services in both paediatrics in Australia and adults in Ireland were pretty similar, but we wondered if other CF units around the world had similar or different experiences. To answer this, we searched through a lot of literature and learnt a lot about telehealth in CF and wrote our first review highlight the past, present and future of CF telehealth [1]. We quickly learned that many CF units are using other devices or technologies to help improve their telehealth service, like smart watches to record sleep and steps, home spirometers, blood pressure cuffs, and continuous glucose monitors for PwCF who have diabetes (in Ireland we would mainly see the Freestyle Libre, Dexcom, among others). This led us to go back to the literature and review what are CF units doing with all these extra devices as part of CF telehealth care, and this led us too our second review [2]. We found devices for telehealth were being used in so many places, including physiotherapy, dietetics, mental health, recording compliance to therapies, and exacerbation detection. We could now see all the great places telehealth could be used in CF care, but we also saw that other researchers were starting to report the same things as us, for example: from a clinical point of view, it is not better than face-to-face care, it doesn’t suit everyone and some PwCF do not want it, and training both our CF care teams and PwCF is really important to its success. But as we looked at the research available, we couldn’t find any answers to this. This led to the next phase of this research, trying to understand the “implementation science” (strategies) for bringing telehealth into CF care well. To do this we partnered up with Dr Robyn Doherty from the CF Registry of Ireland who has a fantastic skillset in “Programme Theory”. We are currently reanalysing what we know about CF telehealth through our latest review that is methodically going through the available research and pin-pointing what information we as a CF community are reporting well, and what we need to report more on. We hope to share the results of this shortly.

Also, during this time, we figured out that these questions around how to best bring telehealth into CF care are big, and we would need a lot of experts to help us find the answers. Through the support of CFI, we were in a position to setup the European CF Society (ECFS) working group on telehealth. The name of this group is the Telehealth for CF (THCF) Working Group, and our goal is to develop EU wide best practices for CF telehealth that will also be applicable to Ireland. There are 53 members in this group across 21 countries, and the group members include CF care teams, PwCF, patient associations, CF registries, and digital health experts. Through our combined knowledge and expertise we hope to answer these big questions and develop these best practices. To start our work in this space, we also developed a definition for CF telehealth that is available on our website. We believe that it is highly important that the voice of the PwCF and their family/caregivers are heard and represented in these guidelines. As such we have a work package dedicated to Public Patent Involvement (PPI). In September of 2024 and through the support of CFI we ran our first townhall meeting in Ireland for PwCF to come and share their thoughts on telehealth. You can find more information on what the THCF are up to on our website.

How can you help?

We are very keen to speak to those who are “digitally excluded” to learn about their thoughts on telehealth. Digitally excluded means people who may not have the necessary computers, WiFi, or tech skills to use telehealth. If you have any thoughts on how we can reach these groups, please feel free to email Tamara on tamara.vagg@ucc.ie. We also hope to organise more PPI events in future, so please watch this space and come along and share what you think of telehealth (the good, the bad, the indifferent – it all matters).

Publications:

[1] Vagg, T., Shanthikumar, S., Morrissy, D., Chapman, W.W., Plant, B.J. and Ranganathan, S., 2021. Telehealth and virtual health monitoring in cystic fibrosis. Current opinion in pulmonary medicine, 27(6), pp.544-553.

[2] Vagg, T., Deasy, K.F., Chapman, W.W., Ranganathan, S.C., Plant, B.J. and Shanthikumar, S., 2023. Virtual monitoring in CF–the importance of continuous monitoring in a multi-organ chronic condition. Frontiers in Digital Health, 5, p.1196442.