User Advisory Group

With a background in the fine arts and educational image licensing in the UK, Juliet moved on to work for the European Commission focusing on higher education.

During this time, she was involved in the creation and development of the HEInnovate self-assessment tool that helps higher education institutions measure, assess, and develop their level of entrepreneurial thinking and skills, supported by a community pf peers from all over Europe.

She was also closely involved in the creation of the Knowledge Alliances Erasmus+ projects that bring together education and industry to better understand the skills needs of both for more targeted employment and growth, and worked on the bi-annual University-Business Forums that brought these groups together.

Since then, Juliet has been a part-time lecturer in innovative and creative thinking at the Erasmus Homeschool in Brussels Brussels and European Project Officer for Bantani Education, a non-profit working collaboratively across Europe and beyond on developing creative lifelong learning practices and skills.

My Motivation to join Label2Enable:

As someone who developed a serious health condition 18 years ago - idiopathic grand mal epilepsy - I have realized that the need for a quality control measure is urgently needed when it comes online information.

The lack of understanding and misinformation prevalent at the swipe of a finger or the click of a link is not only harmful but potentially fatal. We live in a world of casual digital information which people will rely on more than medical professionals since it is freely available and instant. Given the increase in medical conditions linked, too often, to lifestyle (diet, exercise, work environments, mental stress etc.), and the changes in our societies (aging, loneliness etc.) this is becoming even more necessary.

Having been angered and frustrated by disinformation and ignorance surrounding my own condition, I hope that my personal experience as well as my professional abilities can bring something to this project to help create a reliable and useful standard.

Jane Giudice is a 59-year-old, and mother of two, a citizen of Malta.  A banker by profession, she is presently employed at Id-Dar tal-Providenza, a residential home for persons with disability, as a Personal Assistant to the Administrator of this highly acclaimed and recognized organization.  Recently, The European Parliament announced that Id-Dar tal-Providenza won the European Citizen’s Prize 2021.  The Chancellery acknowledged that Dar tal-Providenza has always provided homes with a family-like environment for persons with disability who could not live with their family and that the ethos of the organization is to ensure quality community care.

Jane is very actively involved in patient advocacy and patient engagement at national level in the health and disability sector, at present serving as Secretary within Arthritis and Rheumatism Association Malta on a voluntary basis.  As a volunteer, she was also, a founder member of National Patients Organization Malta, whose main objectives and mission is to raise awareness about the Patients’ Charter.  She also contributed as the spokesperson for the Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and Fibromyalgia Association based in Malta.

Jane has contributed to the first phase of the Gravitate Health project by participating in two online Delphi surveys in May 2021 and currently she forms part of the Gravitate Health User Advisory Group.   She has participated in multiple webinars, face-to-face conferences, relative-to-patient engagement, and digital health.  She was invited by the Novartis branch in Malta, to partake in the European Patients Innovation Summit (EPIS) in 2019, which was held in Malta, and subsequently EPIS 2020 & 2021 virtually. She forms part of the Patient Research Partnership Working Group of European Alliance of Associations for Rheumatology (EULAR) and is a European Patients’ Academy on Therapeutic Innovation (EUPATI) Fellow, graduating in October 2022.  In 2019, she was registered in the Innovative Medicines Initiative (IMI) pool of patient experts database. The aim of this initiative, which was developed to the Innovative Health Initiative (IHI), is to strengthen the role and voice of patients in activities at strategic and operational levels.

As a patient and patient advocate, she needs to keep abreast of developments in digital health including e-health, m-health and medical apps. Her motivation and keen interest relating to digital health and the regulation and rating of medical apps, is in view of the current 21st century needs in healthcare.  We are living in a highly advanced technological era, a very fast paced life, and patients must be more aware of their patient rights and responsibilities.  She firmly believes that one must also keep in mind that through proper management of digital health skills, one and all will be contributing to save peoples’ lives.

My Motivation to join Label2Enable:

I wholeheartedly believe that all patients should and ought to be empowered to cope with their diverse health needs.  COVID-19 has helped one and all to appreciate the importance of reliable health apps.  When the call of interest was issued I felt motivated to partake in this project as a member in the User Advisory Group, because, I feel that patients deserve the best.  This project will set up a very high standard of safety and regulation within the Digital Health framework.  Quality labels and reliable health apps give peace of mind to all users.  In turn, a patient’s healthcare professional is also reassured that the patient’s use of reliable health apps will serve to better treat the respective patient/patient community under his/her professional medical care.  M Health solutions are definitely the way forward to alleviate the suffering and hardship of patients.

34 years old, from Kosovo, married and have 3 children.

Profession as an economist.

Part of the Association for Cystic Fibrosis in Kosovo since its establishment. Currently have function as a Vice President of the association and contact person for international relations, which he is doing in voluntarily basis.

Continuously is organizing Awareness and Fundraising activities supporting people with cystic fibrosis, especially through sport activities (basketball, running and cycling). He believe that the best way to advocate, convince people to support you in different causes is “letting the beneficiaries speak themselves about their situation”. He being a parent also enabled him to transmit the truth and the story to others.

CF Europe Patient Advocacy Award 2021 Winner

My Motivation to join Label2Enable:

The reason that motivates me to join the Label2Enable project is to spread this application in developing countries, and to contribute so that people with diseases in these countries have at least the same approach as people living in developed countries. In addition, considering the challenges that people with cystic fibrosis have, this application can/will offer different possibilities in their daily life. As a parent of a child with cystic fibrosis, I found it reasonable that receiving practices from different countries was very useful, both for me as a parent and for my child. By the end of this project, the final version of the application would provide an easy access.

My professional background is IT. As a patient, actively involved in patient organizations for over 20 years. Ex Board Member of European Patients Forum (EPF) and member of patients and consumers working party in EMA. Through the EMA, I has been involved in various projects as digital and media working group, electronic product information, vaccination, clinical trials portal and more. I am also a vice president of the Polish Neuromuscular Diseases Association (PTCHNM). Co-organiser of many international and national conferences for patients with neuro - muscular diseases. Co-author of publication:“Be an ambassador for change that you would like to see”: a call to action to all stakeholders for co-creation in healthcare and medical research to improve quality of life of people with a neuromuscular disease (Orphanet Journal of Rare Diseases). In private life - passionate of modern technologies and modern devices facilitating mobility and life.

My Motivation to join Label2Enable:

Digital health gives us a huge chance to create and driving toward a patient-centric healthcare system where each of us will have a personal, micro health ecosystem controlled straight from our mobile devices. Mobile apps are a very important part of it. The main reason of making my decision of joining to the L2E project is fact that it is coordinated by very wide spectrum of different stakeholders. It gives us a chance to create a solid background for the intended purpose.

Stephan is a Family Physician with a 25 years track record in European Digital Health. He also holds a Diploma in  Psychology and a Master of Public Health. As one of his pioneering eHealth and networking activities, Stephan has been founding President of afgis, the leading Quality Labelling Organisation for health-related websites in Germany (similar to HON - Health on the Net). Stephan led the initial processes, funded by the German Health Ministry, of establishing the afgis self-certification process and serves today as a Senior Auditor for the quality label. Recently, as owner of IQmed Healthcare Consultants, Stephan compiled an extensive expert paper on Apps, Wearables and Telemedicine. This study contents also touch on the making of and the whereabouts of the newly established ISO 82304–2 label. 

Stephan's overall mission throughout the years: does focus on clinical benefits, health literacy, accessibility, interoperability, innovation and networking. Guiding principle is promoting the betterment of health and care through meaningful use and reuse of data by practice, research and AI/machine learning. Until recently Stephan has been mandated as member of the EC eHealth Stakeholder Group, thus being involved throughout all phases and mandate phases of this important network. Not just being a member, Stephan actively fostered liaison and working group activities within the wider EU stakeholder community by - for instance co-organising two workshops (in Lisbon 2016 and Brussels 2017) of nearly 100 stakeholders serving the eHN revison of the European guidelines of cross-border eHealth services (patient summary and ePrescriptions), i.e. key building blocks of the MyHealth@EU services, part of EHDS plans.

With IQmed in Frankfurt am Main, Stephan provides global policy, project and event support to Digital Health actors in Germany and Europe. He oversees 20 years of being a secretary to the joint eHealth working group of the Federal Health Ministry and the German Länder. He supported efficiently the leadership role of the Health Ministry of North Rhine Westfalia and served e.g. as an editor to numerous reports and conclusions of the German Länder Health Ministers. As President and Acting Board Member of DGG e.V. (German eHealth Assocation) he continues managing eHealth networks in Germany with a cross-border and EU dimension. DGG is a partner in the TELEMED GbR organisation, host to TELEMED, the yearly National Forum for eHealth and Telemedicine (since 1996).

My Motivation to join Label2Enable:

I am keen contributing in the Lable2Enable user advisory board, thus collaborating for making the ISO 82304–2 label a European and global success. Happy sharing in this process hands-on experience from establishing and permanently running a quality label for health related websites (afgis.de, Germany), learnings from a 25 years journey in digital health and recent insights from ongoing, comprehensive desktop research in the mHealth domain, e.g. related to German DiGAs and other Digital Therapeutics in Europe and around the globe.