Myinlife: Harnessing the power of the social circle

The case
Organisation
Betawerk
Client
Alzheimer Centrum Limburg, Alzheimer Nederland
Category
Zorg
Launch date
Summary
Dementia and Alzheimer's are devastating conditions for both patients and their loved ones. Myinlife is an online platform that helps make life as pleasant as possible for patients and their loved ones by helping them stay in touch with their social circle in positive ways. The app does this by formulating networks of relatives, friends, and acquaintances, making it easier for those in need to ask
Project description
Myinlife helps to optimize the care received by dementia or Alzheimer's patients via an innovative online platform. Dementia patients and loved ones caring for them often don't get out much and can find it difficult to ask for help, which can often result in isolation. To avoid this, social interaction and assistance are vitally important. In addition, although a wealth of knowledge is available about dementia and Alzheimer's, many caregivers find it very difficult to translate this information into practical care needs. After all, who can you turn to? What care is available? Can people in the neighbourhood help?

For this reason, Alzheimer Centre Limburg and Maastricht UMC+ enlisted Betawerk to develop Myinlife: an online platform in the form of a web app that helps dementia patients and caregivers to keep in touch with the people close to them in a positive way. Myinlife's main goal is to make it easier for patients and the loved ones caring for them to ask for the help they need. And not just medical help: patients and carers can also share experiences, get things off their chest, and receive moral support: After all, that's the beauty of having loved ones!

Betawerk and Alzheimer Centre Limburg (incorporated in Maastricht University) have been developing MyInlife since 2014 in several iterations and guided by scienfic methods. My Inlife has been researched by Alieske Dam who is conducting a PhD-research that she plans to finish this summer. The focus of her research is the involvement of users in the process of development, thus generating valuable and scientifically based user feedback for each iteration. That enable Betawerk to further optimize My Inlife based on real experiences and scientific research.

It is no coincidence that MyInlife recently has been embraced by Alzheimer Nederland, and as a result, dementia patients and carers throughout the Netherlands can use the platform for vital online support. They can access this support via a link on Dementie.nl, the biggest source of information on dementia and Alzheimer's in the Netherlands (350,000 regular visitors, thousands of registered users). The link on Dementie.nl has greatly amplified the impact of Myinlife. As a result, Myinlife and Dementie.nl now fully complement each other.

In addition, Myinlife can be used by non-Dutch speaking residents of the Netherlands who are affected by dementia or Alzheimer's. Myinlife is also available in Dutch, English, German and French, an essential factor in (border) regions with a highly ageing population such as the Meuse-Rhine Euroregion in southern Limburg.

Myinlife enables dementia patients and their caregivers to clearly and easily indicate what they need and what problems they are having. As a result, the people around them get a clear picture of how they can help. One major challenge was to translate the power of the social circle – family, friends, and acquaintances – into a digital environment. Myinlife displays the social circle of patients and caregivers in the form of 'care circles'. Users can easily share their care needs, and others can respond immediately. Scheduling appointments is easy, and they are made visible to all users with access to the diary.

The Care notebook, in which all important care-related data is recorded, provides the patient's loved ones with immediate access to all relevant information. This gives them a clear idea of everything they can do for the patient. The platform helps to optimally involve the patient's family, friends, and neighbours by sharing events and reminders with each other. Myinlife is also fully mobile, enabling users to receive news and updates of the patient's status at any time within a private social network.

A vast number of people now use Myinlife for vital support with the everyday care provided to dementia patients. The users are very happy with Myinlife, especially with the user-friendliness and the wide range of functionalities the platform offers.

"I don't know what I'd do without this program. It really helps me get over my reluctance to ask for help," explains Jan, a Myinlife user during the softlaunch of MyInlife on the 25th of January in Amersfoort.

In the healthcare sector, Myinlife is seen as a prime example of how technology, science, care, and community building can be combined into a valuable product for end users.

"The collaboration with Betawerk has been an immensely pleasant experience, bringing together medical professionals and digital-technology experts to optimally combine their expertise. We are now working together to further develop this immensely valuable platform," says Marjolein de Vugt, Head of Alzheimer Centre Limburg.
Challenges

Technical challenges

* Secure access: users can only access their own support circles. The content of these circles is organized into care circles featuring specific authorization levels (from intimate circles to outer circles).

* Update from Drupal 7 to Drupal 8: The functionalities were fully redeveloped and the content migrated.

* SSO connections were made to the MAN (Mijn Alzheimer Nederland) system. Drupal users were linked to the MAN users in question.

* All current users and all their content have been migrated to Myinlife. This is huge amount of data, much of which is confidential, so it was vitally important that this migration ran smoothly. For this reason, great attention was paid to testing and checks. The content was migrated from Drupal 7 to Drupal 8 using Migrate Plus.

* Upon logging in to the new app, the workflow for integrating and creating a MAN account for the user begins.

* The previous concept, which featured a limit of one support circle per user, has been expanded to enable multiple support circles per user. This involved a fundamental change in the technical structure.

* The front end consists of fully customized HTML/CSS Twig Templates based on Bootstrap.

* The app is a Cordova App written in HTML/Javascript.

* The API used by Myinlife's Android and iOS apps to communicate was created using the REST module.

* The Push Notifications module was also incorporated to allow push notifications to be sent to the Myinlife app.


Other

* First and foremost, it is vital that it does not stigmatize patients. Myinlife's goal is to give a positive boost to people affected by Alzheimer's and dementia, as well as to their caregivers. It must also be a fully secure platform that is easy and convenient to use. The data it contains is extremely personal and confidential, so it must be handled with the greatest of care.

* By helping involve everybody in the patient's life in their care, Myinlife greatly reinforces this positive boost. It not only facilitates healthcare and health-related issues, but also helps people to build and maintain social contacts, work together to help others, share experiences, and give and receive support.

* To guarantee the users' privacy, data is made available based on care circles: those closest to the patient and the caregiver see the most data, while more casual acquaintances see less. Users can decide for themselves who they wish to put in which circle, giving them full control over who sees what information about them.
Community contributions
Betawerk developed its own module to connect with Alzheimer Nederland's single-sign-on API. Of course, this is not openly distributed yet, but it does serve as the basis for further development of Drupal services that are going to be integrated with Dementie.nl. Since the softlaunch of the most recent version took place only recently the module hasn't been contributed to the community.
Screenshot
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