VASCERN – Patient Groups Develop App Together
RARE VASCULAR DISEASE PATIENT GROUPS DEVELOP APP TOGETHER
To begin with Mhealth, apps and eHealth can play a critical role in rare diseases. They can help address some of the gaps in health infrastructure, from finding out about getting a diagnosis, through to information, support and treatment.
Rare disease groups, because generally small and scattered, are often good at forming alliances. A strong example of this was presented at this year’s European Conference on Rare Diseases and Orphan Products (ECRD).
At the conference, Claudia Crocione from the Italian patient group, HHT Onlus, shared her insights into the development on a new app to help people with rare vascular diseases to find local support.
Following on, the app is being developed by VASCERN, a European Reference Network. These are virtual networks of experts focusing on complex or rare diseases and are co-funded by the European Commission. Patient organisations are involved, for example through ePAGs (European Patient Advocacy Groups).
VASCERN is the European Reference Network on Rare Multi-systemic Vascular Diseases. It aims to gather “the best expertise in Europe to provide cross-border healthcare to patients with rare vascular diseases.”
Step 1: Defining the app proposal
Firstly, the app project was lead by a core team of co-chairs of VASCERN’s European Patient Advocacy Group. The initial proposal, launched in May 2017, aimed to produce an app that gave individuals:
“…a rapid guide to identify the hospital that can offer the best diagnostic and clinical assistance for each rare disease within VASCERN”
Step 2: Building in patient group feedback
Secondly, members of the European Patient Advocacy Group suggested that there should be a dedicated section for contact information for relevant patient organisations in the app.
Step 3: Defining the detailed dataset
Thirdly, as with most rare diseases, it is challenging to find accurate and up-to-date information on sources of support. So, defining the datasets was key to ensuring that all useful information is included, from contact details through to services provided.
Step 4: Reaching out through the European Patient Advocacy Group’s networks
Lastly, to be useful, the app depends on gathering accurate local knowledge on services available. The core team already represented five areas of European Patient Advocacy Groups:
- Paediatric and Primary Lymphoedema (PPL)
- Medium-sized arteries (MSA)
- Heritable Thoracic Aortic Diseases (HTAD)
- Vascular anomalies (VASCA)
- Hereditary Haemorrhagic Telangiecstasia (HHT)
The huge task of gathering local, regional and national information on support started.
Claudia Crocione shared a number of challenges in gathering accurate and complete data, for example:
- “Lack of response” from patient groups
- “Difficulties in explaining the usefulness of the apps”
- Challenges in finding organisations with complete datasets, including gaps in basic contact information – “Not all organisations are equally findable.” – Claudia Crocione, HHT Onlus
Claudia Crocione emphasised the importance of leveraging existing relationships and networks:
- “Trust in the ePAG co-chair favoured adherence to the project”
- “The HHT ePAG benefitted greatly from the existence of the HHT Federation…Feedback was immediate and accurate.” – Claudia Crocione, HHT Onlus
She concluded that:
“In a digital world, we need to improve our findability and reliability…Many POs [patient organisations] could benefit from federated activities to share knowhow and resources and grow.” – Claudia Crocione, HHT Onlus