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Youth Engagement – Why is young people’s perspective on digital health so crucial?  

Transcript

Intro

I think each individual on this planet is always going to be an expert in their own experience, and that in and of itself is very valuable.

What is the concept of meaningful youth engagement?

Meaningful youth engagement really consists of two things. One is listening, and the second piece is action. Now, there’s so many young people that come in their various diversities, right? And so one thing I always find interesting is that you’ll have one young person who may come from a certain place in society. Maybe they have different socioeconomic standings. Maybe it might be geographic barriers that they may be facing.

Each person’s challenges and barriers are going to be different. So it’s very important that as we consider this concept of meaningful youth engagement, we’re really considering what are the different types of young people who are affected by this. In healthcare, that’s very broad, and we can continue to escalate that. But who are the main persons who aren’t being listened to and heard right now, and how can we take action to alleviate the issues and challenges that they’re having? Sometimes we’re invited to the table, and then nothing happens after that. So it’s important to take action on the feedback and insights given.

 What are the primary challenges young people face when trying to engage in digital health initiatives?

So I think the first issue that young people face is just a lack of awareness of what opportunities and spaces there are to get involved in. Sometimes these aren’t adequately, you know, socialized or made aware to everyone. The second challenge that is pretty big is going to be resourcing. Because sometimes young people have, you know, lots of different ideas. We are a generation of innovators. But we don’t always have the resources to be able to actually implement it. And I think that leads into the third challenge, which is just about, you know, not always having decision makers being willing to listen to us. They might say, you’re too young, you know, you don’t have enough experience, you don’t know anything. Everyone deserves a space to be able to speak. But I think each individual on this planet is always going to be an expert in their own experience. And that in and of itself is very valuable. You need a young person in, you know, rural Guatemala to tell you what their lived experience is. Or indigenous persons from other areas of Latin America. Or someone living in the Caribbean on an island for their entire life. Like, all these experiences are vastly different. And we need those spaces and those opportunities to be able to share our own experiences.

What advice would you give to youth organizations looking to get involved in digital health?

So as a youth organization, the first thing you want to do is ensure that you are very representative. And, you know, you may have a handful of, representatives within your organization that go out and speak. But you want to ensure that you’ve actually spoken to the communities and the communities of people where you come from. So you want to ensure that if you’re coming from Jamaica, you’re speaking to not just those who are from Kingston like I am, but those were from more rural communities like, St. Elizabeth or Mandeville. So it’s important to have that combined perspective.

So the second point I would give here is around the importance of digital literacy and understanding. And we have to ensure that the solutions or the world that we’re trying to advocate for doesn’t forget the world that we’re currently in right now. And so any community that you’re advocating for, you have to assess where they are today and what tangibly can happen in the next year or two years. Some communities don’t have internet access. Or if they do, some don’t understand how to use a computer adequately. And you have to look at the specific needs of the people there and what’s the next best digital health tool that can assist them.

What are the future trends in digital health from young people’s perspective?

I’ll speak about what young people want to see. And one is going to be a greater focus on mental health. Interestingly, young people all over the world, especially in the region of Latin America and the Caribbean, believe that this is a high interest area. And so I believe we’re going to see more digital health solutions within that space.

The next one is going to be a focus on data privacy and how we communicate how our data is being used on these platforms. I think that that’s something young people want to see so much of. And I hope that policymakers and decision makers and different, you know, private entities will also take that into consideration.

Content

Expert

Danielle Mullings is a digital transformation consultant for health and education with a degree in Science and Technology. She discovered her passion for technology at Campion College, excelling in the Caribbean Advanced Proficiency Examination (CAPE) Computer Science. Danielle is an advocate for using technology to drive societal change and has worked as the Impact & Partnerships Officer for Transform Health, a global coalition aimed at universal health coverage. She has also been involved in various youth digital health initiatives and served as a UNICEF U-Report Jamaica ambassador.

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    Digital Health – Patient engagement as a key to success

    Transcript

    Intro

    To build trust for patients, I think it’s really important to involve patients in the design of digital healthcare systems.

    How should patients be involved in the realization of a national health platform?

    Patients should be involved in the realization of any national health platform. It is, first of all, a moral imperative. But it’s not just a moral imperative. It is also a business case for national health platforms that aim to deliver better health, to create those platforms with those who receive the healthcare. So, if you want to have good outcomes for patients, it’s important first to know what the outcomes patients want, and to build your health platforms around those needs. It is logical, and it’s also much more efficient.

    How can digital platforms promote patient participation?

    Digital health platforms have an enormous promise for patients because they can equalize and improve access to own health information. It can improve the patient’s understanding of their own health journey, from before becoming a patient to throughout their care. And I think that’s really important because it normalizes the participation of the patient in their own care, and it facilitates the dialogue between caregivers and patients.

    What is the aim of “The Patient Organisations’ Manifesto”?

    In the whole concept of patient empowerment, patient involvement, patient engagement and patient design, the common element is the patient. “The Patient Organisations’ Manifesto” is a tool, a vision for the future that we as a patient community created together with our members and the wider stakeholders that we’re engaged with in a true co-creation way to say: “This is what we want the future to look like for patient organizations.” Healthcare can no longer be done without patients. Patient empowerment is a concept that brings literacy, but also inviting and giving the tools to patients to participate in their own care. Patient engagement is a communication with patients about things that concern them. Patient design is about co-creating health tools with patients and bringing that voice and incorporating it into how things are done. But the whole broader concept of patient involvement encompasses all of them as parts or enablers into a democratic principle of patient communities being active participants and co-deciders in the way healthcare systems deliver care for patients.

    Content

    Expert

    Anca Toma is the Executive Director of the European Patients’ Forum (EPF) which acts as an intermediary between the patient community and EU policymakers. Anca has over 15 years of experience in European health policy working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns.

    Your feedback is important to us

    To contact our project team, please use our form. We look forward to your message and will get back to you as soon as possible.