Entrepreneurs, policymakers and doctors are the most common commentators of medicine and healthcare. Patients are in the limelight much less often. Their stories, however, can be very powerful in bringing understanding of the faults of healthcare systems.

What all patients will agree with is, that during sickness or when faces with a serious illness, one of the key needs of a patient is to receive kindness and help in navigating the healthcare system and their new life. This 4-part series highlights different patient experiences:

1. Roi Shternin from Israel, who visited 33 doctors and got his diagnosis hardly five years after the beginning of his problems, when he himself suspected that his diagnosis could be a rare condition called POTS syndrome. After getting better, he founded several companies to improve healthcare.

2. Marina Borukhovich, born in Belarus, raised in US and living for the past 8 years in Netherlands and Germany was diagnosed with breast cancer at 37 years old, and 3 years later lost her father to pancreatic cancer.  She founded YourCoach, a startup giving coaches client management and accountability tools in order to help heal their clients holistically - mind, body, and soul, with a vision of having health coaches accessible to everyone.

3. Grace Cordovano Polish descend from the US, who was first a caregiver to her mother who got diagnosed with breast cancer at 48. A few years later, Grace was diagnosed with lymphoma, which four months later turned out to be a wrong diagnosis. Today, she is a fierce patient advocate.

4. Bettina Ryll, MD with a PhD in Biomedical Sciences from Sweden, who lost her husband to melanoma, founded Melanoma Patient Network Europe, chaired the ESMO Patient Advocates Working Group, and is Member of the Mission Board for Cancer at the European Commission.

Tune in!

F065 The power of patients 1/4: What do you do, when the system gives up on you? (Roi Shternin)

Roi Shternin had medical ambitions while he was still a student. Before he turned 20 however, his physical health started deteriorating to the point where he couldn’t get up from his bed. He visited 33 doctors. “The 33rd doctor told my parents that I will never get married or have a career, so they should just get me an as comfortable bed as possible, so I can die with dignity,” Roi remembers today.

Because he did not get a diagnosis, and consequently treatment, he lost a lot of his faith in healthcare. And after doctors gave up on him, he decided to try to find out the cause of his deteriorating health himself.

How does one self-diagnose?

First, he studied how doctors work and think, what protocols and methodology they use. Second, he began searching through scientific medical literature to see what he symptoms were correlated with. His AHA moment was, when he read an article about problems a NASA astronaut was having upon his return to Earth, and because those problems were similar to his, Roi assumed his problems originated in the nervous system. He went back to the nicest specialist he met during his patient journey, and finally, after five years, he got diagnosed with POTS syndrome - a condition involving the autonomic nervous system and sympathetic nervous system and affecting blood flow in the body.

Patients want to improve healthcare

After his health improved, Roi born in Israel, founded several healthcare companies. His mission is to improve healthcare and he is currently the CEO of Valero Health - startup aiming at automating a certain level of processes doctors do inside IT systems they use. Roi was also the first Chief Patients Officer for the National Institute of health research of Austria in Vienna.

What can’t be seen, doesn’t exist?

Asked about his observation of different healthcare systems he’s been working in, he says a universal observation is that people without visible illnesses, or without a diagnosis are treated poorly and with scepticism about the gravity of their problems. He also believes that with the rise of technologies, doctors are going to be increasingly in the role of leaders of disease management, whereas nurses, equipped with various digital instruments, will be the ones delivering most of the care.

Tune in for the full discussion:

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Some questions addressed:

- Roi, you have a rare disease called POTS syndrome since you were 23, 12 years ago and it took you five years to get the diagnosis. Can you take us through the journey?

- What did the five years look like? Did you get any medical care at all? Social welfare?

- When you couldn’t move from your bed for three years; what was going through your mind when you kept meeting new doctors and none of them couldn’t figure out what is wrong with you?

- Three years lying in bed, then starting medical research and came up with POTS after a year. How did you start your research?

How does serious patient research look like and how did you present your findings to doctors to be taken seriously?

- You founded several companies - DoQme - a solution for improved patient flow and shorter waiting times in the ER, Help+, a social network aiming at saving lives in single emergencies or as part of the disaster relief and the latest one is Valero Clinical. How did the ideas evolve?

- Originally from Israel, you currently live in Vienna where you became the first Ever Chief Patients Officer for the National Institute of health research of Austria. Can you explain what the role is?

- Where do you see the role of patients in the industry? To which extent should patients be part of everyday development, should they be more like partners/advisors?

F066 The power of patients 2/4: Patients need more than medical treatment (Marina Borukhovich)

When she detected a lump in her breast one day, Marina Borukhovich knew in her heart what this was. She felt this wasn't a normal lump. When she went for a medical checkup, doctors weren't too concerned, since she was only 37. After a mammogram and a biopsy, a week later during her family holiday in Italy, the doctor called. It was cancer. Suddenly, Marina couldn't imagine what the future would be like. "The unknown is the worst feeling you can experience. While I knew cancer doesn't evolve overnight, I had a feeling nothing is being done while cancer is growing and killing me," Marina remembers her first week after diagnosis.   

Care first, worries about costs second

She was treated in the Netherlands and had a very positive experience of the healthcare system and the staff taking care of her. "At the cancer centre, doctors ordered all tests imaginable in a single day. When I wanted to get a double mastectomy, my surgeon stopped me and said: 'You're young, we need to think of your quality of life.' He was looking at me as a person. I also had to get an MRI scan, which wasn't covered by insurance. The hospital I was treated in covered the cost through a research grant they got and it the end I did not pay for anything."

Two years later, her father, who lived in the US, had a much different experience when he was diagnosed with pancreatic cancer. "The tests I had undergone in a day, took my dad a month to get. I found the pace of care unacceptably slow," she remembers. While the US healthcare system is overwhelmed with bureaucracy and approvals before procedures and tests are done, Marina felt the priority in the Netherlands was to heal her as a patient first and worry about the costs later.

Emotional wellbeing need services outside of healthcare

After the medical side of the disease was taken care of, Marina felt she needed other kinds of support to heal mentally and emotionally. She found a boxing coach and researched nutrition to help her feel better. She surrounded herself with a few friends and formed a squad of people for her wellbeing. That was how the idea for YourCoach started to take shape. After the doctors took care of the cancer, in the process of healing mentally, emotionally and spiritually, Marina hacked her body and later went to school to become a health coach and formalize her knowledge. To manage her clients easier, her business partner and good friend helped her design a practice management platform. They both realized that this promised to be so much bigger. "There is an estimated 109,000 health coaches in the US, but we believe that is a highly underestimated number, and there are actually ~500,000 coaches in the US alone with various subspecialties," says Marina, who is optimistic about the future of the industry.

YourCoach aims to become the ultimate authority for health coaches. The platform is targeted towards health coaches to help them manage and guide their clients to be their best selves, the best versions of themselves. Profiles of the coaches are very diverse - from specialists for anxiety for teenagers to specialists for the wellbeing of women executives, etc. "It takes more than one person to heal you, at different points in life we need different people. It takes a village to help you, and that is what YourCoach is for. Clinical trials are in progress to reveal the positive effect of health coaching on an individual's health. By showing positive outcomes, we're aiming to have health coaching be reimbursed by payors in the future. This is how we believe we can achieve our vision to offer health coaching to estimated world population of 9 billion people by 2030, to anyone in the world, who needs their own health squad."

Listen to the full discussion:

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Some questions addressed:

- Can you describe the first weeks after your diagnosis? What went through your mind?

- How involved as a patient were you in your care plan?

- You were treated in the Netherlands for breast cancer and a few years later, your father was treated for cancer in the US. How was the experience of that system like from the care-giver perspective?

- What is your plan regarding how to make a squad of experts for health and wellbeing available to anyone in the world? Psychological support can be crucial but psychotherapy is quite expensive, no matter the country one lives is.

- How many health coaches are on the platform already, how many patients, etc.?

- Imagining that the network becomes huge, do you already have a predicted certification process for healthcare professionals on the network?

F068 The power of patients 3/4: How can patients influence policy? (Bettina Ryll)

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Patient advocacy has many different meanings. In the US, says Dr. Bettina Ryll, patient advocates work as patient’s navigators in the healthcare system. In Europe, they have a more activist/policy influencing role. When a patient’s interest in his disease grows beyond his personal interest, he becomes a patient advocate, says Mr. Ryll, when asked about how she would define patient advocacy. “When it’s not about yourself anymore, that’s when you start moving into patient advocacy,” she describes. 

As most patient advocates, she became the proponent and spokesperson for cancer patients needs and rights due to her personal experience with a serious illness. Eight years ago, her husband got diagnosed with melanoma and died in less than a year. 

Dr. Ryll holds a medical degree from the Free University of Berlin, Germany and a PhD in Biomedical Sciences from University College London, UK. She founded Melanoma Patient Network Europe, chaired the ESMO Patient Advocates Working Group, and is Member of the Mission Board for Cancer at the European Commission.

As she describes, the hardest thing in the beginning of her husband’s patient journey was that, because of her medical background, she knew his condition was terminal, but could not share that information with him. “ I knew from the beginning that he did not stand a chance for survival, but he did not know that. One of the things that shook me was that while cancer is considered first and foremost a medical problem, I was shocked by the mental and psychological burden that comes with it. We were in our thirties when my husband was diagnosed and suddenly went from discussions about having a third child to talks about death.” 

What influence can patient advocates have? 

Patient involvement is fashionable but in most situations, patients are in a minority. This does not mean, however, that they don’t have any influence. While in the past, advocates mostly held discussions among themselves, they are now included in other discussions.

“No patient has a clue about the consequences that come with a disease. It is our responsibility to share our experiences, propose solutions and keep the pressure on, without losing the sense of urgency,” says Mrs Ryll, adding that it is easy to talk about a disease when you’re healthy and a policymaker, healthcare provider or drug maker can have a discussion and go on with his life without the awareness of the urgency. “We have to be active in discussions to keep reminding decision makers that people are dying, and we need new drugs to survive.” 

Accessibility to help

Because there was little information available about melanoma when her husband got sick, she founded the Melanoma Patient Network Europe. In her observations, she sees huge discrepancies in accessibility of treatments across Europe. “A few 100 kilometres can change your chances for survival. People move and sell their property, just to have a chance,” she notes. Her husband was commuting between London and Sweden and travelled to Belgium to participate in a clinical trial. 

One of the things Mrs Ryll regrets is that her husband did not get the same level of pain management support as he got in his end stages of the disease. “I should have insisted for a specialised pain team from the beginning. If you can’t change the outcome of a disease, you can change the way to it. To get pain right, it takes constant monitoring — and a lot of suffering could be avoided.”

Challenges of clinical trials 

Mrs Ryll’s husband died eight years ago and many things changed since then in terms of treatments and availability of information. Many digital health startups are developing platforms for patient discovery and clinical trial enrollment and easier access to clinical trials. But as warns Mrs Ryll, it’s not just about finding a clinical trial but finding the right one. “Enrollment in a clinical trial is always an act of desperation because patients ran out of options. But just because you found a clinical trial it’s not necessarily a good one for you. You need to understand the latest findings in research and what could be most promising for you,” explains Mrs. Ryll. It is, for this reason why one of the key activities of patient advocates is to educate patients, visit conferences, medical debates to stay informed.

Hope in new technologies?

Hopes in the digital health community sare that with new monitoring devices from IoT to wearables, clinical trials will radically change and come closer to the patient. “One of the greatest benefits of technology is access to relevant scientific publications. I think Phase 1 clinical trials, where drug safety is tested, will never go from very closely monitored clinical environment.” 

Later stages are a different story and insights from wearables data can be very impactful. “At the moment, patient data collection is inefficient and inaccurate because many data gathering is done with the help of questionnaires, which rely on patient memory, are done in retrospect and have many aspects that make gathered data inaccurate. But with wearables for example, if you have someone who was active most of the time and suddenly then stops moving a lot, that can be a piece of important information,” says. dr. Ryll.  

Melanoma Patient Network Europe: http://www.melanomapatientnetworkeu.org/

Listen to the full discussion:

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Some questions addressed:

- For starters: What is patient advocacy? How would you describe it? 

- You held many different positions so far — Member of the Mission Board for Cancer at the European Commission, founded, Melanoma Patient Advocacy, was the Chair of the ESMO Patient Advocates Working Group (PAWG) for three years. Can you tell us more about these roles, how to their goals of these organisations (one primarily for doctors, the second is a regulator, and the third one patient centred/led) differ, what do they address?

- If I understand correctly you worked as a doctor prior to going into patient advocacy full time due to your personal reasons, is that correct? Has your perception of medicine and healthcare changed due to the experience you had with your husbands?

- “Dr. Ryll is involved in numerous initiatives promoting evidence-based advocacy. “ What is evidence-based advocacy?

- What are in your opinion some of the greatest successes of patient advocacy you’ve seen so far?

- You come from Sweden — can you talk a bit about the healthcare system, accessibility to treatment and drugs? Do patients have easy access to specialists, are waiting time a problem?

- What about costs and other support needed for patients and care-givers? What kind of non-medical support is available for patients and their families, and what’s missing according to your experience?

F068 The power of patients 4/4: What skills do you need as a patient? (Grace Cordovano)

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Grace Cordovano is an expert healthcare navigating solutionist and award winning, board-certified patient advocate specializing in the oncology space. She is the founder of Enlightening Results, and Unblock Health  - a suite of services that finally provides patients and carepartners with a way to level the playing field and demand access to the critical information needed to make informed, engaged, and empowered decisions about their care.

At 48 years of age, Grace’s mother got diagnosed with breast cancer. Since Grace’s mother was Polish and Grace was the only one in the family with fluent English, Grace had to translate all the medical information to her family, as this was the only way for them to understand the gravity of the situation and the steps forward.

A few years after that, Grace got diagnosed with lymphoma, which four months later turned out to be a serious misdiagnosis. Instead of life changing debilitating condition she had a harmless fungal infection that the body clears itself. She felt incredible relief, disbelief and also anger. Unlike many patients around her, she got to walk away without a cancer diagnosis.

The fights patients need to go through

Grace works with three to four patients monthly, visits appointments with them, helps them navigate the healthcare system, deal with insurance companies and their reimbursement denials, works with hospital to coordinate care. Through her work as a patient advocate, she gained a rich insight in all the flaws of the medical system and mistreatments of patients.

“Often times diagnosis such as cancer are told to patients very matter of factly, with a checklist of things that need to happen. Sometimes patients receive the news over the phone,” Grace mentions. Communication among medical staff and patients is often poor, partially due to technology, says Grace. “At the moment, doctors are overwhelmed with tech and data and have less and less time for compassion. This is not the patient care they signed up for.”

Patient data should be in patient’s hands

When Google announced the partnership with Ascension Health last year, which enabled Google instant access to large amounts of patient data, Grace was among the strong critics of the move. Not because she would be against tech companies entering healthcare and building new solutions with the help of patient data. “When patients try to access their data, all the excuses to deny them access to their records, go to HIPAA. Without your records you can’t even get second opinions, because specialists require every scan and test that was done to you - the discharge letters you get do not suffice. Consequently, patients have to fill out all sorts of paper requests to aggregate their data. But when big tech comes in they get instant access,” Grave elaborates her dissatisfaction with the way the Google-Ascension partnership was announced. Because people generally don’t know much about HIPAA, but the need to understand it and gain access to medical records is high, Grace co-founded Unblock Health. Unblock Health aims to educate patients about regulation, their rights, and offer them a technical solution to access their data.

The situation patients find themselves in after diagnosis

There are four categories of patient experiences according to Grace. The first are healthy proactive seekers, second acute disease patients, third chronic patients and fourth people with life altering diagnosis.

“Once you cross to category three and for, we’re not talking about patient experience anymore, but about survival,” emphasises Grace, and continues that the reality is, that women fear to tell their superiors about their pregnancies. Sensitive diagnosis can be even more impactful on individual’s career. “In theory, one shouldn’t be discriminated because of their disease, but that’s not to say it doesn’t happen,” says Grace.

In this regards, Grace warns that the role of caregivers not appreciated enough and another stressful and constraining role one can find herself in. “Caregiving is a full-time job that is highly under valued, let alone if you’re in the sandwich generation. Suddenly one needs to take care of you children, your parents and your own life.”

“Run your disease like a business”

Because of the complexity of the healthcare system and the emotional toll diagnosis take, Grace advises patients to run their treatments like a business. This means one should prepare oneself as much as possible for doctor’s appointments, by:

1. bringing a notebook with you,

2. bringing someone with you or connect to them so they can call in during the discussion with the doctor,

3. before the appointment consider what is keeping you up at night, what you want to get out of the meeting. Write the questions for the doctor in a notebook and share them with your partner, so if you freeze, your partner can take over.

Listen to the full discussion:

Enlightening Results: https://www.enlighteningresults.com/

Unblock Health: https://www.unblock.health/

Some questions addressed:

• Your mom was diagnosed with cancer at 48, and you yourself were diagnosed with cancer later in your life. But that turned out to be a misdiagnosis. Can you share a bit how that looked like? Getting a diagnosis, identifying with it, only to find out later it was wrong? 

• Before founding Enlightening Results in 2010, you worked as a Director of Medical and Scientific Affairs at a data analytics company that collaborated with pharma and biotech.  to assist in devising intelligence platforms to strategically advance their agents through clinical trials, many of which were oncology agents. What was your perception of patients at that time, did you have direct contact with any or was it more an analysis of their data? 

• What made you decide to start Enlightening Results in 2010? 

• Can you take us through the evolution of your work - what did you offer first and how new ideas came about to get you where you are today? 

• Did you ever get threatened because of what you do? 

• One of the things you fight for is access to data by patients, which is where another entity - Unblock Health comes in. It strives for access to data either for healthcare providers of medical devices and apps. So if I understand correctly, this is a very specific segment of patient advocacy? 

• We talk a lot about patient rights. What do you see are their duties?