European Huntington Association – Healthe-rnd communication

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#BrainLifeGoals Project Grant Winner 2020

european Huntington Association

This communication project can be regareded as an additional workpackage in the EU funded Healthe-rnd project. Thanks to the funding from the European Joint Program for Neurological Diseases the partners from Ireland, Scotland, England and Wales, the Netherlands, Italy and Czech Republic is working together to realize the 3 year project, which was started in 2019.

Healthe-rnd originates from discussions with representatives from the patient community and some clinicians about how to provide better access to expertise and support for patients throughout Europe. 4 HD associations evaluated the project to be of such high relevance and importance that they decided to be co-funders (Scotland, Germany, Italy, EHA).

Although HD is the model disease in HealthE-RND, the aim is to develop an e-health model applicable to other Rare Diseases.

Main project workpackages/objectives in Healte-rnd:

1) develop a holistic quality of life questionnaire for HD affected people and their companions

2) Develop a user-friendly digital platform to provide individualized e-health services to HD affected and their companions

3) Execute a one-year intervention with the e-health services

4) Evaluate effect of the intervention with the Quality of life tool.

In the project plan there was little or no mentioning of communication, however after being discussed several times, the need to have a plan and take action has emerged. Even if not described in the original project plan, we may regard the communication plan to be a separate working package that needs additional funding.

OBJECTIVES

We see 3 objectives for a communication plan in HealtE-RND.

1) Among partners and involved staff:

  • To improve awareness and knowledge about each other.
  • Facilitate internal communication throughout the project.

2) In the HD and Rare Disease community:

  • Raise awareness about the ongoing project.
  • Facilitate recruitment
  • Demonstrate value and challenges throughout the project.
  • Facilitate implementation of e-health services when the project is completed.

3) Develop information resources to be used in communication with the general public and decision makers.

  • Communicate information about and relation to other relevant projects

ACTIVITIES

Related to all 3 main objectives:

  • Establish a webpage
  • Record videos from key activities in all workpackages – main focus on the interventional part

Related to objective 1:

  • Establish an internal platform for communication and sharing of documents etc.
  • Record a short video from all partners with the key staff presenting themselves and their role in the project. Make written information with a presentation of partners and their role.

Related to objective 2:

  • Share videos and articles from partners in relevant networks/social media platforms (Facebook, Twitter, LinkedIn)
  • Produce videos and articles from patients, family members and HCP during the interventional part of the study

MANAGEMENT

The communication plan and activities will be managed by the Family and Expert Panel (FPEP), project coordinator Dr Alzbeta Muehlbaeck, and Muthu Thangaramanujam from Bloomsfield, Ireland. RPEP has a representative from patient organizations in each of the partnering countries. In addition to HD associations we have one representative from Friedrixs Ataxia and Atypical Parkinson. Astri Arnesen, EHA, will coordinate the project.