Apps and adherence – its time to join the dots

We all know there’s an app for everything these days. In the Nurses Professional Development session at WFH in Melbourne, Robyn Shoemark from Sydney reviewed the advantages and drawbacks of data collection using patient-held apps.

Earlier this year, the Australia Bleeding Disorders Registry launched a new patient-held phone app (MyABDR) that enables haemophilia patients to enter their own treatment and bleed data directly into the national registry, much like Haemtrack in the UK, and the NCHCD system in Ireland. Robyn pointed out that the Australian government had spent over $1million developing the app, and hoped that it would help to enhance patient adherence with prophylaxis, which frequently declines in adolescence.

Clearly, as Kate Khair and I acknowledged in our recently published review of the use of mobile health (mHealth) in haemophilia care, collecting and using data on factor usage and bleeds is important to clinicians and health care payers. But as was clear in the nurses meeting at WFH, efforts to encourage patients to use these apps are frequently unfruitful, particularly where the aim is simply data collection. The app developed by the NCHCD in Ireland offers a more direct benefit to patients as the data collected are used proactively to provide responsive care in acute situations. But whether that of itself will be enough to change behaviour remains unknown.

However, as we point out in our article, currently available hemophilia-specific mobile phone-based apps have still not exploited the “social potential” of mobile phones.

As a result of home care, people with haemophilia now rarely meet and exchange experience with similarly affected “peers”. Efforts to address this through providing social networks have met with limited success, but the desire to meet “others like me” persists as shown by the continuing popularity of the summer camps, buddy schemes, awaydays and social activities led by haemophilia advocacy groups.

The kids in your clinics live on their smart phones. They will often spend their time playing games on them with people they’ve never met. We believe there is an enormous and as yet untapped potential to combine data collection tools with mobile-based, haemophilia-specific social networks, to promote expert patients and to bring in elements of gaming theory in order to provide the community and peer support that has been lost with the development of home-based care and which is needed to encourage positive engagement with self health behaviour.

By joining all these dots we might start overcoming the problems of poor adherence with treatments.

Mike Holland founded Haemnet and SixVibe. He is a medical writer, editor and event organiser – find him at Google+