IGF 2022 Day 4 WS #452 Reducing Disparate Outcomes with Digital Health Tools

>> BRIAN SCARPELLI: Hello, folks. This is Brian Scarpelli with the App Association, ACT. And I'm your moderator for working session 452, "Reducing Disparate Outcomes with Digital Health Tools." It looks like closed captioning has been enabled. I don't want to start until perhaps, I should make sure I'm seeing the closed captioning, make sure this is accessible. I am seeing the closed captioning, excellent. [Laughing].

>> It's on in the room as well, Brian. So I think we're good to go.

>> BRIAN SCARPELLI: We're scheduled to begin here right now [Laughing]. So might as well get going. Oh, I see you all. Excellent. Hello. This session is titled Reducing Disparate Outcomes with Digital Health Tools. And on the website for IGF 2022, you'll find a more detailed description with expected outcomes. But this session generally, just to give you a little bit of an introduction here, is about the use of digital health tools. And I do mean that widely, in providing greater access to high quality healthcare and resources, particularly for those in rural, lower income, and less educated and underserved populations who are experiencing lower care quality.

Particularly in light of the COVID‑19 pandemic, crisis, which has in some ways, accelerated the uptake of ‑‑ well, digitization, generally, but the uptake of digital health tools, in a range of use cases in the healthcare sector, in particular.

There's very ‑‑ I think we're looking to explore the experiences in light of that, and lessons learned. We now have more than two years of data, data and experiences. And what conclusions can we draw and how can we build on here. And what role does the IGF community have in sustaining the enhanced digitization. What policies can and should sustain themselves beyond the pandemic. What's been effective, what hasn't, et cetera.

So that's the goal, in a nutshell, of this session here. And you can see ‑‑ I should quickly review the expected outcomes here, which again, these are included in the publicly‑available listing for session. But we're looking to help folks understand the spectrum of challenges and opportunities that digital health tools are bringing to communities.

And the interplay with socio‑economic factors and social determinants of health. Second, looking to do something of a landscape evaluation, survey. Draw some conclusions about the use of digital health tools and services during the pandemic.

Third, learn about ‑‑ explore what the IGF community can do to best realize and maintain the potential for digital health, augmenting the continual care, as ideally, the pandemic does indeed wind down, and hopefully end forever.

And lastly, to share some diverse perspectives about the path forward. So again, my name is Brian Scarpelli. I'm with an organization called ACT, the App Association. And our particular interest, you could say briefly. The reason I'm so excited to be part of this expert panel, expert panelists and you in the IGF community is the App Association has a dedicated initiative to advance ‑‑ responsibly advance the uptake of digital health tools and digital services called the uptake initiative. Several years now, focused on advocating for positive governance changes across ‑‑ in and across key jurisdictions around the world, to realize the positive power of digital health tools.

So we very much have ‑‑ we have members, including those who are on this panel, who are, I think really the perfect people to speak to this very important challenge/opportunity.

It really is both of those things. Very briefly, I can just ‑‑ I'll just very briefly mention [Laughing] who our panelists are. I think it would be excellent to defer to each of you, panelists, to introduce yourself further. Your organization, your experience, where you're coming from.

That would really help frame things up, I think in your opening remarks. But our expected format here today is to have each of our expert panelists do exactly that. Introduce themselves, and provide some opening framings, perspectives, remarks.

And then we have lots of questions. I have lots of questions to ask. But ideally, we'll have engagement and interventions and questions from you and the IGF community. Be it the people in the room or the growing number of participants that I'm seeing already, which is great, participating virtually.

So there's a chat. As my colleague ‑‑ by the way, Matthew Schwartz, is in the room. Thank you, Matt.

Has noted in the chat. There's not Q&A function. There's just the chat. So if you are participating virtually, please do put your questions, comments, anything else, into the chat.

And we'd love to ensure that you're fully participating. So the panelists we have here. Sveatoslav Vizitiu ‑‑ I mentioned, not too much in anticipation here, buildup on my part. But I think all have very unique and important perspectives and experiences from where they sit.

So I guess if it's OK, Sveatoslav Vizitiu, I would love to turn it over to you Sveatoslav, to start, provide some opening remarks, and introduce yourself. And then Jelena, and then Betsy after that.

>> SVEATOSLAV VIZITIU: Hello, my name is Sveatoslav Vizitiu, and I am representing the Wello, the startup based in Europe in Romania. And we're helping the families with (?) Children. Already assigned with Minister of Education in Romania, and our program is quite good making now in Romania, meeting all the schools, making this fund ‑‑ election fund, let's say lessons. And that we'll be doing now. That's my short introduction.

>> Good morning, everybody. I'm Jelena Malinina, and I'm data director at the European organization representing patients living with rare diseases. We do not work directly with patients, our members are. And we do have members in more than 71 European countries for the moment. And rare diseases, basically, that you can find a variety of definitions of what it is. Basically it's the condition which is more rare than chronic diseases, more rare than anything else we're used to.

So there are quite many challenges for this specific group. And there is not so much data available. So sometimes it's just five people in one country having that condition. So we do work quite a lot on data uses for research. We also do quite a lot of advocacy for different social rights and all kind of issues, people of that group face.

So I'm looking forward to having a discussion with you today. And thank you for coming.

>> BETSY FURLER: I'm Betsy Furler from Houston in the U.S. and founder of For All Abilities, a startup. We work with employers helping them help their employees with or without a disclosure of a disability. I'm also a speech therapist. And have worked extensively with people of all ages and abilities. And I have a lot of lived experience in the healthcare industry, both professionally and personally.

>> BRIAN SCARPELLI: Excellent. Thank you. And I see you all in the audience, hello. Apologies for not being there in‑person. Excellent. I think just some opening questions that I hope will first of all ‑‑ I would love to hear from any and all three of you of our expert panelists on this question here.

But also, I hope that this starts to provoke some thoughts from the community here. Again, whether you're in the room, whether you're participating virtually, we love to have you engaged and participating. And if you have an intervention and/or a question, please don't be shy.

But this opening question. Again, for all of our panelists, really, is, as the public health crisis has evolved, COVID‑19 pandemic, we've seen healthcare providers adopting new digital health tools. And there's a wide range of terminologies used. Telehealth, remote monitoring solutions.

I guess, I would maybe capture them as both synchronous, live voice, video type services, as well as asynchronous services. Where one is, for example, wearing a device that's capturing some reading, some patient‑generated health data, at an interval, storing it, sending it to a care team for trending. And perhaps early intervention to avoid a more significant negative health episode.

So as the ‑‑ and recognizing that COVID‑19 has not disappeared, right? It's ‑‑ depending on where you are, it is still considered or declared by a government, a public health emergency. In some other instances the public health emergency legal declarations may have expired, yet even in those places, it has not gone away. So recognizing that.

You know, some of the special allowances, special funding, et cetera from, in particular, governments, may be pulling away.

So has the trend toward ‑‑ has the trend in uptake in use of digital health tools slowed in your experience where you are focused? Be it in jurisdiction, region?

Are things back to normal or have things largely returned to a pre‑pandemic approach for digital health? Or has there been lasting change?

I thought that would be kind of a good ‑‑ I realize that's an open-ended question, but a good question, hopefully for just kind of framing the rest of our discussion here.

Anyone who wants to go first? Go ahead.

>> SVEATOSLAV VIZITIU: An example in Romania, we have, like you're saying, back to normal. We use a lot in the pandemic and COVID, telemedicine. But now, let's say, everyone is back into normal. That means doctors don't accept to have a telemedicine. But for my opinion ‑‑ that doesn't ‑‑ in my opinion, it's back to normal, and it's not OK.

Private sector, good thing is they are still working on the digitalization. They are still working on digitalization, meaning they are making more software, making more accessible versions. And they're working good and bad direction. That's my opinion.

>> JELENA MALININA: And I can adapt probably from the European perspective. Indeed we have seen a super rapid change in appearance of different types of services, monitoring, calls, whatever, during COVID‑19 times in many European countries. Because it was kind of necessary at that time, because you couldn't go to the doctors just like that.

So the first preference was online, in many countries. Now I also share that it's slowed down. Telemedicine has slowed down. Not because people don't want to use it, but we've realized probably some drawbacks of these services. One of them, and it's a big question for telemedicine in Europe, how to make it equal to on‑site services, is that people do not have the same rights when it comes to telemedicine, and going for a physical visit to a doctor. For instance, if it's very, very clear in terms of reimbursement how your insurance covers your normal visit to GP or any other specialist.

In many country it's not obvious what type of medicine service is and whether it will be covered by insurance. In the EU there's a right to seek healthcare in another country, not the country of your residence, but another country of the European Union. For example, I'm in Belgium, but I can seek healthcare provisions in my home country. I can go back and be reimbursed by the Belgian system. GP visit if I want to seek the reimbursement. Usually not a GP service, but it will be a specialist care which I seek in another country. In the case of telemedicine, the thing is in some countries it will be recognized equally to the same physical visit, and some it doesn't.

So it creates a big legal mess, and it's not always clear in terms of liability. Because in some countries, the doctors or healthcare professionals such as nutritionists, it can be different classification. In one country, classified as a doctor, and in another it won't be.

So it really depends, and all these legal questions, they are not harmonized. And this is one of the reasons as well why this service has slowed down. Because there is no rapid need. And now there is a big, big need also to find out how to we regulate it, and what rights do we provide to people when it comes to telemedicine.

And it's not an easy question to find an answer to, I must say. Thanks.

>> BETSY FURLER: I would say specifically in Houston, Texas, and probably across the U.S., telemedicine is now used more than it ever was before, pre‑pandemic.

It's lessened since the pandemic has kind of started fading away a bit. But if we're looking at pre‑COVID, and now definitely there's a lot more use of telemedicine. I think it does really level the playing field in some ways for some patients. Especially those patients with the rarer or more severe diseases, where they might need a very specialized subspecialist, that may be far away from their residence.

Specifically in Houston, Texas, we have severe traffic, and it's a very, very large city. And a lot of times patients aren't able to physically get to the location of the doctor that they want to see.

So telemedicine has really opened that up and it is still being used pretty frequently, I would say, in Houston. Although a lot of people are going back to in‑person visits. In the speech therapy and therapy industry, it's also being used very heavily. And I think that's really opened up so many opportunities for people to get to the special therapies that they need to get to, which they often attend at least weekly or maybe several times a week.

And it really cuts down on the amount of time to those appointments, when you don't have to factor in an hour or two of traffic.

>> MATTHEW SCHWARTZ: And Brian, I would like to ask you, actually, you've been tracking it very closely in the U.S. There's already a talk of the public health emergency maybe winding down in the next couple of months.

What risks do you see there?

>> BRIAN SCARPELLI: Well, that's a great question, Matt. And I can, just as a brief snapshot of the approach for the United States has been essentially that indeed the government has declared a public health emergency. Capital P, capital H, capital E. Which has been in place for over two years at this point.

And the significance of that legal declaration has been to ‑‑ is that it permits the government to set aside a wide range of legacy legal requirements that have long restricted the uptake and use of different digital health modalities. As time has gone on, even before the pandemic. I have argued that many of those restrictions have had less and less of a connection to serving the public interests.

We're talking about some restrictions that go back 25 years, you know? It's just quite a task for the legislature in the United States to update the laws for a variety of reasons. And so enjoying that flexibility has now been something that patients, providers, innovators across the spectrum, and policy, and government, have been able to enjoy now for two and a half years

So there's an immense amount of uptake, but there's a fear that eventually the public health emergency declaration will end, and many of these policies that have hampered the uptake of digital health tools, will snap back into place.

Causing someone in a rural area, for example, who for the last two and a half years has not had to drive two, maybe three hours or even longer to see a specialist. Because they've been able to receive the care they need and undertake the consultations they need to take, via digital health, via even basic tools. Like a live video and voice interaction like I'm having with you all right now.

That capability would be removed for anyone who lives in an urban or suburban area, per se. Which is quite concerning.

So that is one use case. And we came quite close, actually, to the end of this legal declaration of public health emergency declaration. But it's likely to be extended through, you know, basically early April, at the very latest, at this point. So very, very relevant questions for the U.S. jurisdiction, for sure.

I appreciate you asking me that, Matt. So another related question, and again, I think it would be great to hear from each of the panelists though.

Is that one of the ‑‑ I guess to frame it this way, is there's uptake, and then there's a separate, but very related question. Access and uptake of new services and tools. And then a different, but related question, of quality. Of quality of care.

And one criticism that I have seen with enhanced access to digital health tools, from some ‑‑ this is not a view ‑‑ and by the way, I'll be forthright and say it's not a view that I largely share personally, but it's part of the conversation, so it's worth probably teeing up.

That in the rapid increase in access to digital health tools and services has not necessarily brought with it enhanced quality of care. And like I said, I tend to generally ‑‑ inevitably there probably may be interactions that don't reflect and enhance quality of care through digital modality. I think that's inevitable. But generally, I'm curious though, what your all's view on that is.

Do you have concerns, et cetera with quality of care in this new, far more digitally enhanced and connected continuum that's been brought about relatively rapidly, due to the COVID‑19 pandemic? Again, whoever would like to go first.

>> BETSY FURLER: I'll go first. I see some issues, especially around forced use of digital healthcare in some situations, and difficulty with people with a variety of disabilities or challenges being able to access that care. For instance, I know of a case where an elderly person was required to do a telehealth visit versus an in‑person visit, but yet the connection, for a variety of different reasons. Some relating just to the Internet connection. But also the access to the technology can be confusing.

Really, you know, decrease their ability to be able to participate in the visit, like they may have been able to in‑person.

I think overall that the quality of care is pretty equal, depending on the specialty you're looking at. But often we have appointments that are face to face, but it's just a conversation that can easily be done via telehealth.

Also being able to share information or data that's collected can sometimes be done more efficiently and more easily. And often, it seems that the level of stress, both on the provider and the patient may be lessened when it is through digital health versus in‑person and rushed, and problems, as I said with traffic earlier.

So I do think the quality of care is adequate, specifically in the therapy industry. I think for mental health therapy services in particular, telehealth has been very helpful for many people who couldn't get to appointments before.

And it also provides some anonymity, so people are not having to walk into a building and be seen in that building. For other patients, they may need to go somewhere, because their home is not a safe place for them to talk about their mental health needs. In the rehab therapy industry, such as speech therapy, it has opened up providers to people who have not had access, whether they're in a rural area or a part of the city where they can't access a private ‑‑ a clinic, an office building.

And it has really opened up that. And with all of the amazing tools that we now have on the web. And we have access to. Therapy can be even more exciting. And to many people, especially children, they're very attracted to the screen, and it helps them be able to participate. It also helps in some situations, although there are a lot of legal issues around licensing and things like that.

But providers, if they have licenses in other states, if someone moves in the U.S., they can continue to see the same provider. And depending on all of the reimbursement issues, and like I said, licensing. And also that helps with continuity of care, even when someone lives in a ‑‑ moves to another country.

>> SVEATOSLAV VIZITIU: Also, I want to add that between them, they're quite similar now with telemedicine and normal appointments. The benefits, for example, when you want to reduce the time also in the hospitals, also the time, let's say, 90% of the ambulances, when they come, they come from nothing. Because many guys, like people's accessing, because they are shocked, they don't know what to do. And maybe in this direction, telemedicine will also help, and reduce the real problems in the hospitals. That can happen.

But also for my personal, I use telemedicine in the COVID, and it's quite good, because I don't want to lose one hour or two hours just only to arrive at the hospital, and to only wait in the hospital. And this is quiet, very good. And sometimes it's really just simple check point. And if you are feeling you need this next level, then you can go in‑person to check with a doctor or some person.

Like you also said, many countries are just simple, let's say, normal advising. But the (?) are just medical.

>> JELENA MALININA: I will try to answer to this question a little bit wider, not only focusing on telemedicine, but also bringing up the quality of digital health tools we use.

There's actually an interesting study which compares online psychotherapy effectiveness to in‑person psychotherapy. And it's equal. So the effectiveness of online or in‑person mental health services are exactly the same. And there have been some studies done.

So it also contributes to the opinion that these services in fact, telemedicine, could be as effective, as efficient as in‑person.

Of course, probably we're not speaking about surgery or some serious, more serious interventions in that regard, yet, at least, for the next years to come. But who knows what the future will be.

I think yes. So it has a lot of potential. I have a patient story, actually, which is ‑‑ I wish it would be different. But how in that sense, digital health tools could be helpful.

So the person has a rare condition, and he was hospitalized very urgently while he was on holidays in Italy. And originally he comes from Denmark. He has condition for his entire life, so he perfectly knows what is happening to him. He has lot of data about him, all the needed tests and everything.

But while he was on vacation, his Danish records were not easily available to him. So all the tests he did quite recently just before doing his trip, were held in the hospital in Denmark. And due to the fact that the systems of Italy and Denmark were not really interoperable. They were not speaking well with each other.

He lost quite a lot of days when it comes to receiving the right care, simply because the doctors in Italy did not know much about his condition, since it's rare. And they didn't receive the data in time, and then they needed to repeat all the tests.

If we're talking about the tool which allows you to have electronic health records, allowing you to have your data with you and share not only with your specific healthcare provider, but somewhere else, it would save him enormous amounts of time. And also would save him from complications, which occur to his health, obviously, because of the delay.

And yes, I hope in the years to come, we will have more success stories like that. Another aspect, which I would like to touch is the quality of different digital health tools. And perhaps depending on the region and the country you come from, this quality could be very different, and there can be different assessment tools. But if we just go on the Google Play and see how many wellbeing apps exist and how many you can download. And the question is are they equally good.

I'm sure some will be fantastic. And some, for example, medical devices which are software based are really, really cool and even are getting reimbursement by the government because their efficiency is proven to be helpful for one or another condition.

But the enormous amount of different types of software which occurs to health and wellbeing, raises a question of whether it's good in terms of quality. Whether this device or app, what it gives you is equally good. And probably the answer is no, because they are very rarely ever rated by somebody.

And even trustworthiness is questionable.

>> BETSY FURLER: I wanted to just piggyback on what she said about the interoperability. It's what I consider to be a severe problem in the United States, because we have ‑‑ it sounds like we have less interoperability state by state in the U.S. than Europe has, from country to country.

And even within the U.S., for instance, in Houston, within one healthcare system and the other, there is no interoperability. So if a patient has to be hospitalized at a hospital down the street, literally, just a few blocks from their typical hospital.

I also have a patient story about this. With a patient that had to be hospitalized at a different hospital, because of space. No beds at the hospital that they normally went to.

They were inpatient, and they were not able to get ‑‑ the doctors could not get the records from the hospital down the street. And therefore the tests had to be rerun.

Making a financial burden, burden of time, stress on the patient. And additional time before the patient got the care they needed, because of the lack of interoperability.

>> BRIAN SCARPELLI: Thank you. Well, I'm pleased to see that we have an interesting question here in the chat. And I can just read it. I would love to see what your reaction is.

We propose to create remote medical clinics in hard-to-reach places. Such clinics can function on the basis of satellite, Internet, drones and solar panels as power sources. Such clinic could be equipped with appropriate diagnostic equipment. Initially with little effort it would be possible to take pictures of the patient, collect blood and urine samples, specific parts of the body, blood samples could be sent by drone to larger medical clinics and be the basis for diagnosing certain diseases, issuing prescriptions and sending things to the remote clinic by drone. Is that possible? That's the question. What do you all thing?

>> SVEATOSLAV VIZITIU: I think yes, because we are already doing, already exist many startups. But with IE, detecting for example, some screening photos, also about the diseases, anything ‑‑ my opinion is quite easy to make it now in these 2022.

>> JELENA MALININA: It reminds me of a project I was in my previous job. Done by UN and WHO, about bringing telemedicine to remote areas of Georgia. Because of the geographical location. Very mountainous area. So sometimes it's very, very difficult even to reach with the helicopter. Some areas the helicopter cannot land. People do live there, and of course they require healthcare.

And the idea was also to connect this smaller villages into the hospital. The issues we faced were not technology itself. These were more basic things such as electricity and access to continuous electricity. And even with solar panels, it depends of course, on the location.

In some countries, probably in CENIC countries, this would work, but I was two weeks ago in Nepal for high holidays. And when I was high up, so the houses there, where we were staying. They had solar panels. But the thing is we could only use, for instance the lights during the evening. And the charger for the phone during the day.

Because electricity panels were ‑‑ solar panels were charged enough with the energy just for the day, because of lack of sun. And it could also probably depend on the length of the day, because if we are speaking about north, the day is pretty short.

So usually it comes back to some super basic problems, which are not easy to solve. But I believe it is possible. Yes.

>> BRIAN SCARPELLI: Great. Thank you.

>> BETSY FURLER: I agree.

>> BRIAN SCARPELLI: [Laughing] Sorry, Betsy. Go ahead.

>> BETSY FURLER: Oh, I don't have anything to add. Just agreed to what they have to say. I think it would be wonderful to pull off something like that. And probably be helpful in all countries. Including the U.S., there are places that aren't getting healthcare at the moment.

>> BRIAN SCARPELLI: Indeed. All right. Great. Well, thanks for that question, Henryk. Appreciate that. So I guess I could switch to some targeted questions I had for some of the panelists here.

Maybe can you talk to the digital health and nutrition, obstacles you have found in bringing Wello to a broader patient base, et cetera, Sveatoslav?

>> SVEATOSLAV VIZITIU: Yes, sure. It started like a couple years ago with my personal problem. I have been overweight, like more wider than now.

And from this point, I also have a family and the statistical think, if you have one problem, overweight, obese, then the children can be 40% obese. If two, then it could be 70% probability overweight or obese. Because we were IT company and we are developing a lot of games, gamifications.

And we started to make a gamification for the children. And it's quite cool. Because children are playing like games. They have challenges every day. And these challenges are activity challenges, like to run, walk, and jump, and so on. And simple games. About healthy play, how to go shopping and so on.

And the amazing part, they are doing this one, the parent can set up real rewards in their life. And if they do these challenges, they receive a ticket to cinema or bicycle, and so on.

And when they are doing these challenges, we are tracking the activities like of movement, and we provide to the parents, the information. And that direction, when the child is more active in the evening and in the morning and so on. And either parent introducing information, at home, they think it's cool. Diet or nutritional plan for family, that would help to lose the weight, or if not, just to live more healthy.

What we saw now with good point that also the main points in the family are the parents. If the parents know more informations about nutrition, about how to make activities with the children that are more interesting. Then the family started to be more healthy. And that's why we have page there, where we make some questions and challenges for them, for the parents.

It's also quite good progress. And now we are proud from this year, from September, we started in Romania, in all the schools, we have a program in the nutrition, that we are learning the children about nutrition. And we have created the first nutritional influencer, that is like robotic girl that was created with the children, between 10‑18 years.

And it's like, have a virtual like robotic leg and robotic hand. And the most interesting thing that also the teacher didn't know, to know the nutrition. They just can play this video, and this video you are learning, how to make the quizzes, and you are drawing and so on.

And the results are amazing. We're already doing research paper, like children are absorbing information better with 40% than with normal teachers. And my opinion, it's very cool.

Yes. This is a short description of what we are doing at Wello, and the results are very good now.

>> BRIAN SCARPELLI: Excellent. Thank you. OK. Well, another thread within the space, I think. And this is a question for you, Jelena. Some have raised concerns about the potential for additional privacy and cyber‑based security threats in light of increased provision of certain health services that would normally be transacted on an in‑person basis now occurring over a digital modality, over the Internet.

In fact, sadly, we've ‑‑ I think one development that to many that is probably general known outside the U.S., is a recent court ruling related to reproductive health and access to reproductive health for women.

Which has really brought those concerns to the floor. And I'm curious about whether ‑‑ what your take on this particular question is, in light of that decision and your experience in Europe.

And if you have any recommendations about how to ensure that patients with retain strong privacy and security assurances, as more and more care moves to virtual, online.

>> JELENA MALININA: Thank you. That's a very important question, actually, and unfortunately, we still have a mentality that these things happen either in science fiction movies or not to us. But in fact, privacy risks and security risks and also informational harm risks are super high for each of us.

And what happened in the U.S. actually is the perfect and sad example of how this can cause damage. I must say in the U.S. ‑‑ some countries are super advanced with electronic health information, but some are not really. So there will be lot of changes in the upcoming years, because there is a general direction of, that we are all moving into digital healthcare in a way.

And these risks will be getting higher and higher. For instance, with the establishment of electronic health record in Europe, the question is whether I should for instance, I go to the dentist, right? And that's a healthcare professional in most of the countries.

The question is should I share all my electronic health record with the dentist. Meaning it could be some sensitive information about mental health or for women, it can be an abortion for instance, which she did, and whether she wants, or a patient or whether anyone wants to share with their dentist.

Probably not. But the question is how do we organize the data storage, especially when it comes to personal health records, in such a way that the patient can share certain things with certain doctors and maybe withhold certain information.

It's a really difficult, difficult question to answer, because of course the situation with the dentist, or if you go to the pharmacy for e-prescriptions. But in some situations, patients might withhold information which is vital for them, and some might not have a good assessment of what is the information to share and what is the info to hold.

So there's a thin line between privacy and health needs in there. But I think the answer to this is that we should have sufficient system, which is protective of us. Because it's not only about privacy or security. There is a huge risk also of informational harm.

It can be discrimination as well, and this discrimination can occur even without a person knowing that it occurred. So a certain decision might be made on certain data or patterns and you might not know.

Rare disease community, most are of genetic origin, so the data is more sensitive. It affects the whole family and potentially future generations. So the question is how to treat the data and what safeguards we put to ensure these things don't happen.

And we're not speaking enough about the cybersecurity in the hospital, healthcare settings. The cyberattacks are happening on hospitals weekly, actually worldwide. And it causes enormous financial burden to the hospital. Because sometimes they cannot function for some weeks properly.

Especially if their electronic system is really, really developed. There's not that much paper left. Or dependent on certain computers and databases installed in there.

It can cause quite a big harm to patient health. There's a story that happened some months ago in Germany when that was an attack on the hospital. The patient in the ambulance at that moment was rerouted to another hospital, because the closest one was blocked by the cyberattack. And she died.

So it's not an exact cause probably of the cyberattack, but the fact that the nearest hospital was not available and could have saved that person's life? Yeah, probably, you know, only that one story is worth an investment in good cyber security for healthcare settings.

>> BRIAN SCARPELLI: Thank you. Betsy, if I could turn to you for the next question. I know yesterday, for another session, we were part of together, we chatted about the need to make sure communities with different abilities are able to access, in particular, digital health tools.

So I know you've spoken to this a little bit. But if you did want ‑‑ I wondered if you wanted to talk in some further detail about the impediments you have seen with the uptake of digital health tools for those communities.

I know we've mentioned already several layers. Some seem to be infrastructure based, broadband availability. Then there's maybe the layer of data flows you mentioned briefly, earlier. That seemed like a very important one. And another one that I think has come up at least once already has been digital literacy.

There's probably other barriers too, right? But I was just curious about what do you think there.

>> BETSY FURLER: Well, first of all, digital health tools, just like all digital tools, need to be made so they're accessible to all people. And people with disabilities are often the group that gets left out of the conversation about that.

Whether it's from a design perspective or it's from a physical access perspective, that accessibility of these tools is vital. Maybe more than any of the other digital tools, because it's your health and your life that is at stake here.

I think it also is the digital literacy issue around some of the people who need healthcare the most and are the biggest users of healthcare, are the people who struggle the most with digital literacy. Whether there are aging populations, or people with disabilities who haven't had the access to learning about ‑‑ learning their digital literacy, due to less access to those types of devices.

Or people who haven't had experience due to economic struggles.

So I think that the digital literacy is very vital in this, because those are the people who need that medical care the most. And they're impacted by it the most as well. It also goes to how is someone going to communicate through the digital tools, if it's a Zoom or a telehealth video conference‑type appointment. Do they have access to captioning or sign language interpretation that they might have in‑person if they went to the hospital or a clinic.

But that may not be as easily accessed or thought of during the making of the appointment. If there's someone who's non‑verbal who is using a computer or a tablet‑type device to speak for them, is that able to be heard over the device?

Hearing impairments also come into issue there, especially hearing impairments where the person does not sign. So signing may not be helpful for them. But they, for instance, someone who is older who using hearing aids, and then there's another layer of complexity around the tool, because the hearing aid has to be connected to the device that they're using for the appointment. Otherwise they may not be able to hear the physician.

So there are lots of issues. I think it's so important to think about this disability access problem or need when we're thinking about healthcare. And by making the products very accessible, thinking about disability, it also makes it very accessible for all the rest of us.

Because we all have our own patterns and changes throughout our lives that make, especially cognitive accessibility, very, very important. For instance, I'm jetlaged, I'm nine hours different, and I know Brian is like 3:00 in the morning or something.

And it entire not getting enough sleep automatically makes us less able to cognitively work through any problems. And often tech is one of those things that when we're just simply tired, we have difficulty with. If we're ill, we often have more cognitive issues.

Someone with existing cognitive issues, they'll be greatly exacerbated when they're sick. Even though those of us who don't have those issues on a daily basis, if we're sick, we have COVID, the flu, even a cold or some other simple illness, it may be much more difficult for us to access the digital tools.

Due to the cognitive accessibility.

>> BRIAN SCARPELLI: Great. Thank you. Well, just looking at our time here, I thought I ‑‑ and Matt and I have been keeping an eye on the chat here. I don't think there's any further interventions.

There's maybe a final question for each of the panelists here. And food for thought for the audience, the IGF community that's participating both in the room and virtually as well.

But looking towards solutions. Looking towards next steps. If you were able to wave a magic wand, [Laughing] what's one or several changes. And they can be technology based. They can be policy based. Whatever you'd like.

But what's one or several changes that you would like to see that would make the most meaningful advances in helping underserved and unserved patients better harness the potential of digital health to improve their outcomes?

>> SVEATOSLAV VIZITIU: For me personally, innovation, like a startup, do help, like data. Meaning, for example, at least in Europe, I understand it's already working ‑‑ if it would come, like exactly in cases like this one, when you go to another country, to another hospital. Also, I don't know. I'm not paper guy, and I'm losing all papers!

For me, everything electronic would be most amazing. Also for me, like a startup, when I can read something, for example, about the children, about the family that, hey, some issues. I don't know, maybe some allergies, that would help a lot also, with diets. And from my perspective, it would be the best scenario, if we would have the common database. OK I agree very about the security and privacy, if user of family says to share it, you can use it, with some limits, let's say.

But these databases, I'm pretty sure it's about the policy. Without any policy and the government, it will never happen. And digital government, it's quite different, difficult, let's say? And it can be started, for example in Europe, European Union, and then smaller states, and more countries and access. That would be my dream. Would be cool to have it.

>> JELENA MALININA: It might be coming up in the upcoming years. That's the plan to share health data as much as possible, for different purposes, but also in a safe way. For me, the more I think about what would be one thing if I pick of all, is I would put an emphasis on actually digital health literacy. I will explain why. There are many things which I need to be done from the legal perspective ‑‑ we need to be done from the legal, from the policy perspective. But it's a theory unless implemented properly. In order to implement it properly, all of us, and I'm not just speaking patients, doctors, everything person, depending where you work, if you're a policy maker, researcher, it doesn't matter.

We all still have a lot to catch up on what digital health literacy and digital skills are. Because the understanding is very limited still. And even within the scope of this conference, and this conference is for digital, for Internet, for the governance. How often do we speak about digital rights compared to the human rights, even though these are interlinked?

Do we speak about that in schools? Maybe in some, yes. But I think we're still, to me, we made a tremendous shift as a humanity from non‑digital to digital. But our mentality didn't shift. So I think a lot of problems will be solved, and a lot of positive things can come out of technology. The moment we start taking digitalization, together with raising our own capacity. To me this is the key and it's not easily achievable, I would say, not immediately. But I hope it will be soon. Thanks.

>> BETSY FURLER: I'll just follow up with I like both of their answers, also. And then also, the kind of big picture that we have to have access to the Internet in order to use these tools. And how important it is to get access to all people everywhere in order for them to be able to have the digital literacy, and also access the tools that they need for healthcare.

>> BRIAN SCARPELLI: Well, excellent. Thank you, all for this. And thanks to the IGF for hosting this discussion and to everyone in the community for being here and participating. It's such an important topic, I think, for IGF to keep at the floor.

And I really encourage everyone to get as engaged as they can at their local, regional, and at the IGF level. Can't think of a more critical use case for improved digital health ‑‑ I'm sorry, for improved digital infrastructure, literacy, data flow. I mean all of the different levels than the healthcare sector. A great discussion.

I'm honored to be a part of it. I hope everyone has an idea, if you didn't already, about why I'm so excited about this topic. Appreciate the expertise from all of our panelists. Thank you all so much.

As next steps, I know that there will be a post‑panel report for this work session, like there is for the others. And I encourage you to reach out to Matt and myself if the App Association and our connected health initiative can in any shape or form support, help you or support you there. And not to speak for our panelists, but I would encourage you to reach out to each of them for the same.

Because we're all very enthusiastic about realizing the true potential of digital health tools and services across use cases. With that, I suppose we should close this work session. Thank you all, again. And have a good rest of your IGF 2022.