VHL Alliance, Competition Winning App

VHL Alliance, what helps make patient group app competitions successful?

At the end of February, VHL Alliance, the US patient organisation for people with the genetic cancer, launched the winning app resulting from a competition they had organised.

The competition:

  • Attracted entries from more than 20 teams at leading US universities
  • Created the VHL App, a comprehensive resource for patients, caregivers and clinicians
  • Was financed by an anonymous donor, who funded the $5000 prize money.

Patient groups have embraced many models in competitions to try to generate meaningful apps.  Are they getting better?  Looking back on research in the field, it would seem that groups may be learning from past mistakes.

Creating the VHL App

The VHL Alliance (VHLA) is an American non-profit organisation which aims to improve awareness, diagnosis, treatment, and quality of life for those affected by Von Hippel Lindau Disease. This is a genetic condition characterised by blood vessel tumours in up to 10 parts of the body.  Because it can involve cancers in so many areas, coordinating care between many specialists can be quite complex.

So, the goal of the competition was to address the challenges VHL patients and families face through an app to better manage care.  The app attracted entries from nearly two dozen teams from some of the top universities in the United States.

The contest winner and developer is Cody Craig from Ohio State University. Craig, is a computer science and engineering student from an agricultural family in Ohio. The VHL Alliance launched his winning app, VHL App, at the end of February.

Learning the lessons

In this recent case, the unmet need defined in the VHL Alliance’s competition was always clear.  Research has tended to show that patient group competitions can be disappointing if teams fail to:

  • Review the current mix of apps on the market, to avoid duplication
  • Identify a critical unmet need
  • Involve patient views throughout.

For example, at the end of 2016, a team from Plymouth University in the UK, published their research paper “Is the Health App Challenge Approach of patient-led application, development and review worthwhile?”

They compared in the study past experience of app challenges organised by patient groups, with different models.  Their conclusion was that:

“…supporting patients to develop apps using the ‘app challenge’ approach is probably not worthwhile nor sustainable. However, greater value should be placed on app reviews. There is an online audience ready to give opinions, and people listen to reviews when choosing apps.

Harnessing patient views both on existing apps and general app functions, unrestricted by developmental skills or market availability, may help identify needs and improve self-management support tools.

A website where health apps and websites can be reviewed and prototype designs submitted would be worthwhile, at least for conditions with high prevalence such as diabetes.

It remains unclear whether condition specific health charities could take the role of sustaining such review websites.” – Emily Ashurst, Ray Jones , School of Nursing and Midwifery, Faculty of Health and Human Sciences, Plymouth University, Plymouth, United Kingdom

What is the way forward for app competitions?

Clearly, app competitions, hackathons and other ways of triggering apps are challenging for patient organisations without outside support or sponsorship.  Arguably, in rare diseases the unmet needs from apps are often clearer, and as with the VHL Alliance app, there is a genuine gap to fill.

However, there are also still critical gaps even in major therapy areas.  For example, even in the notorious area of `me too’ Type 2 Diabetes apps, there are still unmet needs along the complexities of the Type 2 Diabetes journey.

The research from Plymouth University shows how hard it is to spot the `app gaps’ and avoid duplicating existing apps in app competitions.

So, a key challenge for many patient groups may be in defining the scope of an app competition:

  • Too loose a definition risks duplicating existing apps
  • Too tight a definition risks shutting out innovation, or silencing unmet needs that have not been articulated yet.

If patient-group led competitions are to be an effective catalyst for innovative, patient-centric apps, there is a need for clarity around best practice, process and metrics.


Find out more about the VHL Alliance…

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Read an overview of the winning app…

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Download the winning app…

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Download the research paper “Is the Health App Challenge Approach of patient-led application, development and review worthwhile?” published in Health Policy and Technology…

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