New project: e-health for Huntington’s patients and families

In order to ensure good care for Huntington patients and their families, the HEALTHE-RND project aims at developing an e-health platform. The platform will ensure access to help and information – regardless of where people live.

Written by Alzbeta Mühlbäck, MD

What’s it all about? 

Huntington’s disease (HD) require intensive cooperation between different medical disciplines and services, so-called ‘multidisciplinary care’. 

Given the scarcity of resources, this is not an easy task, which is why demand and reality often fall apart. 

In order to be less dependent on the patients’ distance from a Huntington centre, there is an urgent need to develop new ways to ensure access to experienced and multidisciplinary centres.

The HEALTHE-RND project aims at turning the ambitious goal “knowledge must travel, not the patient” into reality. 

The project team assumes that if successful, the developed model can be transferred to other rare neurodegenerative diseases.

Who is supporting the project?

The project is funded by the European funding programme JPND. JPND stands for the EU funding programme “Joint Programme for Neurodegerative Diseases”.

The project team applied with HEALTHE-RND and was selected for funding by the EU.

The JPND funds come from several countries, which are made available in a common pot – although not all EU countries contribute to this, accordingly not all EU countries are represented in JPND.

Photo: Alzbeta Mühlbäck, MD

Who is involved? 

As part of this project, a multinational team of representatives is involved:

Representatives from Huntington centres and research institutions from Germany, the Czech Republic, the Netherlands, the United Kingdom, Ireland and Italy. 

In addition, patient organisations from these countries, coordinated by the European Huntington Association (EHA), will take part in the project. 

How will the project proceed? 

The project will be carried out in three phases: 

1) In the first phase, a new, patient-centred instrument for assessing the quality of life of Huntington patients will be developed (‘need-based patient value (PV) assessment’). 

The instrument will measure the impact of both medical and social interventions (e.g. counselling) and evaluate their influence on the quality of life. It is planned to develop three scales which are tailored to Huntington’s disease patients with manifest disease (motor symptoms, HD mutation carriers in prodromal, premotor phases of the disease) and their accompanying persons or partners. 

e-health (also written eHealth) is a relatively recent healthcare practice supported by electronic processes and communication, dating back to around 1999.

In the development of all three scales, the same advanced methodology is used, including intensive discussions with patients – so-called ‘focus groups’. 

2) The second phase will run parallel to the first phase: A multidisciplinary, multilingual and multicultural e-health platform will be developed, introduced and tested for its practical feasibility. 

This will be carried out with the help of The National Living Laboratory from Leiden, Netherlands. The Laboratory have many years of expertise in e-technologies and is going to build on its experience from a similar platform. The platform has been used and expanded for years by the Huntington Centre Overduin. 

The new platform will be developed in several languages. Patient organisations from the participating countries will be involved in the development process. The e-health platform will be developed in Germany, Italy, Ireland and the UK in their respective national languages.

The HEALTHE-RND e-health model will consist of a patient/accompanist module and a multidisciplinary module for healthcare professionals. Both modules will be developed in close cooperation with the users (i.e. patients, family members / informal carers, health care professionals). 

Photo: Countries involved in the project

A user-centric approach will be used to ensure that the e-health model meets their needs. These are mainly the need for information and counselling, health services and social support, but other needs may also become necessary in the course of the project, such as fall prevention, dealing with swallowing difficulties, transport and work-related counselling or support in the parent-child relationship.

3) In the third phase of the project, the effectiveness and impact of the e-health model will be assessed in a clinical study using the newly developed quality of life assessment tools. 

As soon as the introduction phase of the e-health model has been evaluated by the users and the contents and procedures have been agreed for all partner countries, the clinical study will be conducted on the basis of two patient groups: 

One group will use the new e-health platform and its online programs and the other group will complete the usual treatment with visits to the local Huntington’s Center. By comparing the two groups, the impact of the new e-health model on users’ quality of life can be determined.

Photo: European project partners

How are patients represented in the project? 

The European Huntington Association (EHA) is the umbrella organisation of Huntington associations across Europe and represents more than 30,000 individual members. 

The project will actively collaborate with the European Huntington Association to anchor public and patient involvement as research partners in all phases of the project. The EHA will establish and coordinate a body with one representative from each national/regional HD association of the partner countries. 

In addition, EHA plans to share its experience with local Huntington associations at meetings and conferences on rare diseases in order to promote the implementation of this project model for other diseases. 

What results do we expect? 

The HEALTHE-RND project is an innovative approach to developing, applying, testing and evaluating an e-health platform that complements inpatient clinical care.  

The international project team aims to use Huntington’s disease as an example to develop a multilingual e-health platform. The platform will improve care and support caregivers – regardless of where they live and distance to the nearest Huntington centre, while at the same time assessing the added value of this service.  

The development of the e-health model for rare neurodegenerative diseases is to be seen in the context of the European Reference Network for Rare Disorders and tries to contribute to the improvement of patient care with the help of telemedical methods. 

In order to ensure that HEALTHE-RND reflects the real needs, demands and wishes of patients, caregivers and affected families, and to achieve an individualisation of the care and counselling offered, the project will be carried out in close cooperation with the European Huntington Association and local Huntington associations.