Bringing together patients' perspectives on eHealth and mHealth

ITP Support Association Launches App

SMALL PATIENT GROUP LAUNCHES ITP APP WITH NOVARTIS 

Often, there are lessons to learn from the smallest of patient groups.  The UK’s ITP Support Association worked with Novartis to launch a new app for patients with Immune thrombocytopenia.

The association:

  • Consulted the patient community on the app at outline stage
  • Continues to consult post-launch and prior to extension from iphone and ipad to android devices
  • Kept a clear vision about what the app needed to do.
An early patient group pioneer of apps

When we speak at conferences about apps from patient groups, we have often used the UK ITP Support Association as an example. They are a small group supporting people affected by immune thrombocytopenia, a rare bleeding disorder.  From the earliest days of myhealthapps, when it was still a printed directory, we always included their early app.

For us, it sent a clear signal. If a rare disease patient group can create a very focused app right for its community, any motivated patient group can do it.

From information to wider support

When the ITP Support Association finally retired their first app to replace it with one with more functionality, we were very keen to see the result.  This is a therapy area where there is still little support and information for patients.  It can take many years for patients to find the right clinicians who can make the very specialised diagnosis to trigger treatment.

We tend to be highly critical when a developer churns out yet another `me too’ information app in a therapy area cluttered with apps.  When it comes to rare diseases, getting reliable information is still key.  With their latest app though, the ITP Support Association, has embraced wider functionality, including a symptom tracker and medication log.

Consult the patients, and keep on consulting

The Association developed the app with Novartis UK who fund it.  Patients were involved in its development, and were consulted again at outline stage at the groups’ annual convention.  In the weeks following the app’s October launch, the association is constantly seeking out patient views to improve it, for example through requests on its facebook page.

Show real leadership

We often hear from patient groups about an imbalance of power when they work with pharmaceutical companies.  For example , when a group is faced with pages of contracts filled with legal caveats and clauses, it can be daunting to feel in control when developing an app with pharma.

Shirley Watson, MBE, the founder of the UK ITP Support Association, is well known for the strength of her leadership.  Where larger patient groups need to rely on detailed governance and teams, smaller ones depend on strong leaders with a clear vision.  Balancing the views of medical advisers, sponsoring pharmaceutical companies, and patient groups is never easy, particularly in medical areas as complex as ITP.  However if the patient group has a strong team, the app is more likely to focus on what patients need.

Feedback so far is that the app is proving popular with the ITP community, and the android version is in development.

NEXT STEPS: 

See the app review on myhealthapps.net…

Click here

Download the ITP Symptom Tracker app…

Click here

Visit the UK ITP Support Association site…

Click here

 



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