What do the patients want? — Patient empowerment in the spotlight on Health Hub Vienna’s second digital meetup
Patient empowerment is one of our most important calling when it comes to bringing digital health innovation to Austria. For our second meetup this year we invited patients, innovators, founders, communication experts and representatives of the public sector in order to be able to capture the full landscape of opinions regarding our topic. Additionally, over 30 countries were represented and accordingly, the event turned out to be interactive beyond our expectations.
In lay terms, patient empowerment means that the patient is involved in every aspect of their health from prevention through diagnosis to treatment. There are several instantly obvious benefits to this: aside from the sense of agency and involvement, the systemic benefit is that if the patients can take some of the aspects of their health into their own hands, then the healthcare providers will need to be involved to a lesser extent.
Patients are people!
The humanisation of the patients was one of the key messages of the event. The keynote speaker, Roi Shterin, a professional patient (he served as the first-ever Chief Patient & Head of Patient Innovation for the Ludwig Boltzmann Institute in Austria) and a founder and entrepreneur himself pointed out that “We are all patients at some points in our life”. Regardless, the Health Care System tend to put patients on the conveyor belt. He emphasised in his talk that we, patients should not be handled as the by-product of the system, but the system should be built for them. A lot of the participants and panel members were agreeing with Roi; Beatrice Verdino, foundatrice of Verdino, a digital agency centred around healthcare and empowerment pointed out that “Patients are people, and they are different”. She was emphasising that the patients are a heterogenous target group, all the different factors regarding their background, age, socioeconomic status must be considered in order to be able to reach them and help them.
Companies like Medivizor (from Health Hub Vienna’s batch #5) could be part of the solution. Medivizor aims to bring personalised treatment to patients who are facing chronic medical conditions. The company uses software tools and the social web in a more personal way so the patient and the caretaker can be more informed and up to date. By understanding the individual needs of the patient and tailoring recommendations to their needs, Medivizor can provide clear, relevant, and cutting-edge information they need to know in a personalized fashion.
What do patients face during their journey?
Sabria Lagoun, program manager of Health Hub Vienna opened the event with emphasising that “Patients are lone fighters”. Getting through the healthcare system can be really challenging as it was highlighted by both keynote speeches. Roi had an extremely difficult patient journey and was bedbound for several years until he diagnosed himself with a rare diseases condition (POTS Syndrome- a not-so-rare disease that some of the recovered COVID19 patients reporting similar chronic symptoms to). This led him to create The Patient School that offer a platform for patients, caretakers, and healthcare providers to learn together how to treat each other better, navigate their health journey can offer a real platform to find solutions to these issues.
Our second keynote speaker, Helena Binetskaya, founder of the successful respiratory device and software company, Healthy Networks (Lungpass), had a similarly excruciating journey when she received conflicting diagnoses based on different lung sounds doctors heard examining her sick baby daughter. Based on the feeling of not “could not suffer to see another doctor anymore”, she developed a portable and smart stethoscope to be used for home monitoring purposes. The company got a significant backwind during the COVID19 pandemic and now trying to extend its application to various respiratory conditions.
All in all, both Roi and Helena complained about regardless of being part of very well established and reputable healthcare system, their voice as a patient were either lost, neglected, or not being taken seriously.
Bittersweet state of patient-centred innovation in Austria
Being insightful and determined, both Roi and Helena decided to fight the system and use their revelations from this extremely difficult patient and caretaker journey to bring innovation to healthcare. Austria is considered to be one of the best healthcare systems in the world, nevertheless startups and innovators still face some significant barriers when it comes to integration and acceptance. As Roi pointed out, the entrepreneurial journey of a foreign startup in Austria can be appear to be very similar to the bumpy patient journey through the healthcare system.
“Austria is supposed to be the medical Silicon Valley for healthcare but we are failing — there is no one stop shop to talk to unless you are local and have the correct amount of vitamin B”
— alluding to the necessity to be well connected from the very start in order to be successful. Sadly, both Roi and Helena decided to bring their business to Estonia, but perhaps not all hope is lost. One of our panel members, Nadine Nehme, founder, and chief scientific officer of the wildly successful company Medicus AI described a similarly difficult head start but saw great returns in choosing to establish their headquarters in Vienna nevertheless: “It is not very easy to break the ice at first in Vienna, but when it is broken, it is a very favourable environment for startups”. She also emphasised the role of local Accelerators and Hubs like INiTS and Health Hub Vienna, that helped “tremendously” to navigate this difficult ecosystem.
Health literacy, legitimacy and prevention is neglected
The panel discussion revolved around neglected factors of patient empowerment and targeting the remaining barriers. Nadine Nehme emphasised the importance to involving patients in their own healthcare, which is only possible if patients actually understand what is going on in their care. Providing education via easily accessible knowledge is one of the main pillars of patient empowerment, and hence Medicus AI is one of the flagship startups pursuing this mission: Nadine explained that turning cryptic information on the Electronic Health Record for patients is key to involving them in their own care.
Another issue that was clearly outlined in the discussion was that
“Healthcare is an ailment care. We are missing prevention”
It has been repeatedly shown that the burden on the healthcare system can be significantly relieved by promoting healthier daily choices and flagging those who need to be regularly screened for certain conditions.
ELGA to become an open innovation platform?
The data required for the latter is currently available through the electronic health record system of Austria (ELGA) and we were honoured to host Günter Rauchegger, the CEO amongst our panel members. In 1993/1994, Austria was a European Pioneer in digitalization introducing the e-card and 11 years later ELGA was founded with a core mission: to further the development of the IT architecture of electronic health records. Accelerated by the COVID-19 crisis, ELGA has been transforming their processes with patient-oriented solutions such as the e-medication or the Impfpass (vaccination record). Günter Rauchegger explained that although ELGA was designed for HCP to HCP communication, and hence most of its functions are currently hidden for the patients. More recently, ELGA is gradually undertaking a patient-centred innovation path and is having a long-term vision of the possible involvement of the patients in the management of their administrative journey. Günter envisioned the future role of ELGA being similar to the all-rounder function of the internet:
“In the past, we were thinking of ELGA as a collection of applications for HCPs, but more recently we would like to move towards making ELGA an infrastructure (similar to the internet- eds.): we would like to be able to do everything on it without leaving the platform, including becoming an interface for other applications.”
These aspirations are not yet implemented or initiated, as ELGA will need a strong support from governing bodies to be able to be standardised and connect to external partners. Answering to the question of how the innovation process could be facilitated, Gunter emphasized the role of being able to demonstrate that convincing use cases with clear benefactors exist in digital health innovation:
“Currently we are just scratching the surface, but we need examples that has been widely accepted (like telemedicine) and also good explanations for technologies that are hard to explain to end users and decision makers (like AI solutions)”
The patient-centric transformation of the electronic health record system is not without example in Europe: Israel is a well-known example for granting prime data access for innovation projects and it was also recently announced that Medicus AI was chosen as a founding partner to create France’s digital health ecosystem, as part of the Dossier Médical Partagé (DMP), promoting a patient-first and holistic approach for healthcare.
In terms of interoperability, many of HHV’s alumni startups also represented on this meetup offer cutting edge solutions. The Swiss company Medisante aims to simplify the integration of patient- generated health data into clinical systems. Its global, direct-to-cloud medical IoT infrastructure, that combines the global tech for anonymous device data with the healthcare privacy solutions for sensitive patient data. By abstracting hardware complexity and diversity in the home of the patient, Medisanté allows Remote Patient Monitoring to scale anywhere in the world. Austria might look into these examples for inspiration in the future.
Are the patients ready?
The breakout sessions brought a fantastic opportunity to open the discussion to the audience. Petra Grell-Kunzinger, Founder miazorgo.com — the first rating platform for external care giving agencies — mentioned the willingness of people to be involved in anything that is approached with a positive mindset and accompanied by a reward.
“People are super happy to collect points in Billa or to be involved in collective recycling programs.. should we find a way to motivate people to be involved in their own healthcare journey?”
A lot of solutions are available for involving patients into their therapy, for example through facilitating medication adherence. DrugStars is an app that makes it more meaningful for patients to take their medications. As knowledge and control is motivational, DrugStars’ solution is ultimately empowering for patients. As patients take their medication in the way prescribed by their physician, they can share their real-world experience with their doctors via the DrugStars app and be rewarded with the opportunity to donate money to patient charities for free. Vaica is another company that builds customized and digital patient support programs for pharmaceutical companies and specialty pharmacies to improve care outcome for chronic patients, as well as includes physical, smart medication dispensers that are connected to a strong cloud infrastructure in real time, enabling users to deploy, manage and monitor remote medication dispensers, vital sign monitors and upload vital sign readings. Implementing these solutions on a day-to-day basis would enable patients to be more motivated and invested in taking their medications and tracking their disease progression.
Attorney Hannes Schlager raised concerns about the lack of granted legitimacy that is hindering the empowerment of chronic and old patients. According to his opinion, patient education should not stop at some forms the doctors fill out. His clients often reported that procedures were not explained to them and gave an example when a patient was not involved in the decision regarding a serious medical procedure due to not being taken seriously because of his age.
Natalie Lottersberger, a home nurse, added that a patient journey, especially for patients in need of chronic care does not end with a discharge note filed in ELGA. Nurses and caretakers are an often-neglected and undervalued participants of the HCS.
“Nurses have to get connected to be able to access ELGA and to add information. Insurance companies and prevention programs could gain so much information with this addition and it would mean a huge benefit to the public.“
Irene Fialka, CEO of INITS and managing director of Health Hub Vienna emphasized that the readiness from the patient’s side is often related to healthcare literacy. However, literacy and affinity for prevention is directly connected to wealth status, and while some patients are ready, eager, and involved, the message can be often lost with others. Upon integration, companies like Medicus AI and Verdino promoting better understandability and enhancing outward communication will be crucial to overcome this barrier in the future.
What do patients want?
As a closing note, patient empowerment is a very complicated topic with a multitude challenges ahead, but some of the pointers and basic CTAs raised by our keynote speakers were simple and crystal clear:
According to Roi Shternin
“patients are really simple to please, they just want to be listened to, included in the decisions regarding their own journey and not to fall between the cracks (of healthcare)”.
Helena Binetskaya added that the most important factors are the
“sense of control, calmness and understanding”
in having a more pleasant patient journey.