Bringing together patients' perspectives on eHealth and mHealth

Umbrella Group For Thalassaemia Innovates

Thalassaemia

It’s not often we see a website from a not-for-profit organisation supporting patients that is so ambitious that we wonder how on earth they do it all. The answer would appear to be skill in attracting grants and funding from government programmes and industry sponsors and a focus on digital innovation. The Thalassaemia International Federation manages both scope of content, and quality. And does it in six languages. 

Global commitment

The Thalassaemia International Federation (TIF) is a Cyprus-based non-profit, non-governmental patient-driven organisation. Its mission is to: 

“promote the implementation of national control programmes for the prevention and treatment of thalassaemia and other haemoglobin disorders in every affected country.”

It acts as an umbrella organisation, with member groups in 60 countries, including over 30 national, 13 European and 4 international disease-orientated patients’ organisations.

As part of its global commitment, the site is available in Arabic, German, Greek, English, French and Italian. 

Connecting patients

A great deal of emphasis is put on connecting patients with the rare set of inherited haemoglobin disorders. For example, the organisation this year updated its app ThaliMe to connect the worldwide patient thalassaemia community. 

Also, they launched Thalassaemia Patients Connect, a single social media platform in one place, bringing together:

  • Patients’ forum
  • Facebook page
  • WhatsApp chat group
  • YouTube channel
  • Twitter.
Embracing eLearning

Although the software to create eLearning has become far easier in recent years, it can still feel beyond the resources of many patient groups. The Federation created an expert patient eLearning programme, funded by a European Union Health Programme and industry sponsors.

The eLearning platform aims to create expert thalassaemia patients who will:

  • Develop “the necessary skills to effectively self-manage their condition and confidence to develop effective partnerships with doctors and other healthcare professionals.”
  • “Be able to support and help other patients to cope and self-manage their condition” 

Across three modules, the programme includes an introduction to thalassaemia, a clinical overview, the latest advances in care, and patient’s rights. The intention is for the eLearning materials to be translated into each of the Federation’s six target languages. It’s free to patients over 16 who belong to associate member groups of the Federation in each country.

Building local capability

The website is also a mine of advocacy resources, including comprehensive publications on creating a non-governmental organisation for patients and a detailed review of patient rights in different countries. In October, the Federation is running a capacity-building workshop in Germany.

This blog has barely scratched the surface of the site. It won’t win design or usability awards, but the scale, scope, relevance and quality of content is what matters most. A huge task in one language…but six?

NEXT STEPS:

Visit the site at…

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Find out more about the organisation’s expert patient eLearning programme at…

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Read about the ThaliMe app at myhealthapps…

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