A couple of years ago, Roi Shternin diagnosed himself with a rare condition. He was the “Patient in Residence” at the Open Innovation in Science Center of the Ludwig Boltzmann Gesellschaft (LBG). In “Research, Patients and the Public”, we want to shine a light on LBG projects in which research opens up to the expertise of multiple stakeholders outside academia.
A couple of years ago, Roi Shternin diagnosed himself with a rare condition. Our moderator, Stuart Freeman, briefly introduces you to the concept of this podcast. In “Research, Patients and the Public”, we want to shine a light on projects in which research opens up to the expertise of multiple stakeholders outside academia. Roi was the “Patient in Residence” at the LBG Open Innovation in Science Center.
Roi’s patient journey
When serving in the army back in Israel, Roi got injured in his lower back at the age of 19. Ultimately, he found himself bound to bed. It took him until his 28th year of life until he could walk normally again. From bed, he dedicated his time to studying – back then still dreaming of becoming a doctor himself.
Patient empowerment – the basic level
Roi Shternin advocates that every single patient should be in charge of her or his own health and actively take part in the decision making during treatment. However, his case should stay an exception, he says: while being a partner to the doctor, the latter should be the one coming up with the diagnosis.
Being a patient without diagnosis
A couple of years ago, no doctor in Israel knew about “Postural Tachycardia Syndrome (PoTS)”, Roi reports. Remaining without diagnosis he was confronted with being labelled “hypochondriac”.
Taking the matter into his own hands
At the age of 25, one of the uncountable doctors he had seen told his parents, that neither would “he” ever walk again, nor marry or go to university. This was the point when Roi decided to take the matter into his own hands.
Feeling like “a sack of symptoms”
Being bed-bound, Roi often felt like being seen as a bundle of altered biochemical reactions, he says. He compares the medical system that he experienced as a factory of intake and discharge of cases without a name. Feeling this much patronized was unacceptable to him.
Patient in residence – experts are experts
Now working at the LBG OIS Center, Roi fills a position that he refers to as “a third level of empowerment”. After almost two years of rehabilitation, he decided that he wanted to change something in the system. He founded a series of start-ups tackling different lacks in assistive tools for health care like “Doqme” or “Project Hearts”. Realizing that despite his efforts “the patient is still left disempowered”, he founded his first NGO (#disautonomiaisrael).
While giving a talk in Vienna, he got into the field of view of the LBG. He was positively surprised that a research society wanted to learn something from his patient view – according to the principle: “Experts are experts – no matter of the education.”
When patient empowerment becomes a career
Any patient may manage groups online but also become an opinion leader. Digitalization and the “democratization of voices”, as Roi calls it, enable patients to make a change: by taking others with them on their journey. Roi himself has made this transition from being “disabled” to empowering not only himself but also others.
Time of change
While some hospitals may still use the phrase “we put the patient in the centre” only as a slogan, Roi observes more and more organizations asking people with lived experience to fill positions such as “patient experience officer”. Also, research organisations such as the LBG or NHS invest money in doing research on how to involve patients, he reports.
Still a chronic patient
Empowered patients still have to manage health challenges although one might not be able to tell from the outside. Being in a “luxurious position”, as Roi describes it, he stresses: “My voice equals the voice of this guy lying in bed – or this girl lying in bed.” Also, he still has his bad days.
A different kind of race
Having “lost” years of his life, he now wants to accomplish his goal of empowering others as fast as he can. On his mission, he wants to draw the attention of the public, research and health care to “the invisible illnesses.”
“Everything my physician said I wouldn’t have”
At the end of this episode, Roi stresses how much power words can have.
Please let us know if you want any question on this episode to be answered and help us shape this format.
Guest and Consultant: Roi Shternin │ Moderation: Stuart Freeman │ Concept and Production: Marie Niederleithinger │ Project Lead: Lucia Malfent, Raphaela Kaisler │ Music: Kurt Stolle
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