Navigating the health care system is a nightmare for parents whose kids have rare conditions. One mother has decided to do something about it
Having a baby is a happy but assuredly stressful experience — take it from me. I thank God that my two kids have not had any major health issues. But the experience is far more difficult for other parents who get that bit of unexpected news as soon as their children are born. Many struggle to cope with mystery diagnoses, finding the right specialists and uncovering special programs their insurance plans will cover. Even the most adept people will trip over themselves trying to navigate the bureaucratic and dysfunction health system of any given country. Parental stress seems to be an inescapable and unavoidable part of healthcare.
But one case in particular, that of Raissa Hacohen, is shaping up to be a transformative one for the medical industry.
Hacohen was born in New Hampshire and got her degree at Brown University before moving to Israel about 10 years ago. She spent time at Jerusalem Venture Partners and Cisco, seeing the rapidly growing Jerusalem startup ecosystem grow from adolescence into its current juggernaut form. When she finally got the chance to settle down and have a family, it was anything but smooth sailing. Her son had a rare condition that threw her and her doctors for a loop.
“We got stopped in the NICU for 4.5 months. As a first-time mom, I had never been exposed to healthcare in my life outside of my pregnancy. It was sort of sink or swim,” Hacohen recounts to Geektime. “‘Wow. We have all these advantages and we’re drowning!'”
Her son was diagnosed with hyperinsulinemia, the opposite of diabetes in that the body produces too much insulin. It occurs in 1/25,000-50,000 births. If it’s caught early, doctors can prevent the development of hypoglycemia and permanent brain damage.
“It was a tough time for us as we navigated his diagnosis and options for treatment and I sort of started looking around and said, ‘You know what? My mom is a physician and runs a hospital in the States.'” Still, having all this background knowledge of how hospitals ought to work wasn’t the advantage she would have thought it would be.
“The patient experiences need to be better. What’s a doula? Someone who helps you navigate the system. A patient should have access to a doula no matter what you need help with.”
That’s where CareNav comes in. Registered nurses (RNs) sign up for extra time outside of their normal hours, offering pre- and post-visit consultations on families’ options in the national healthcare system treating a given condition. “Patient navigation” and even outside consulting, especially among cancer patients. Californian startup OncoGambit designs treatment plans for cancer patients, Vida Health just raised a round to deal with patients with chronic illnesses,and US-based Patient Pal is also navigating the system.
CareNav wants to go beyond just help on paperwork. They’re targeting insurance providers, employers, and hospitals as institutional customers all with an interest in getting their patients to the right doctors more quickly. That saves a hell of a lot of wasted time for patients and doctors or departments who aren’t best suited to be the next door that sick patients knock on.
Other industry developments are helping initiatives like CareNav grow, especially the move from a classic “fee-for-service” health model (you go for an X-ray, your insurer pays for that X-ray) to a “fee-for-value” model that pays for the entire process of treatment for a given condition. Payments would cover all checkups, scans, follow-ups and procedures involved in diagnosis, treatment, and recovery. That incentivizes hospitals and clinics to avoid unnecessary scans or sending patients to the wrong people and to get them better more quickly.
Now Hacohen’s mother, Dr. Stephanie Wolf-Rosenblum, is her co-founder and feet on the ground in the United States. As the VP of Development and External Affairs at Southern New Hampshire Health in Nashua, NH, there are few better co-founders for a company like this who also have the knowhow and networks to get it off the ground.
The idea has caught on like wildfire. She’s taken part in the the Philips Innovation Challenge co-sponsored by the Erasmus University Rotterdam in the Netherlands, has been invited to Paris’s Viva Technology Conference this June, and entered the Novartis Healthcare Challenge. Raissa lives and works in Jerusalem where she has taken part in the Siftech accelerator, even though her startup is definitely a different kind of participant for a program like Siftech.
“I knew from the get-go we didn’t fit in the incubator model because we don’t really have a piece of technology per se. A lot of the investment into incubators is purely technology-focused. If we had a piece of technology we’d have been funded already. In Israel, it’s harder to get funded with an operational play than a technology play.”
It’s more than just a service as it includes what is effectively a course on navigating the local health map. You learn to “ask the right questions. Instead of falling into the black hole of the internet, you can use our service,” Hacohen tells Geektime. But beyond that, they are hoping to help out. Hacohen and co. refer to “layers” around the doctor-patient relationship. For one, “doctors don’t have enough time to explain everything to you, and secondly now with so much information online, patients are coming to their doctors with 20 different differential diagnoses.”
Increasing ‘patient literacy’
In setting up their revenue model, CareNav is simultaneously targeting insurers and employers as potential customers rather than offering it solely to individuals. The idea would be aimed at monthly subscription services that would cover all a company’s employees or insurance provider’s policyholders, thus giving them wider swaths of the market and a more scalable product. Right now, they are providing consulting for individual customers directly at a rate of $20 for 15 minutes or $40 for 30 minutes.
For now, they have 20 nurses in the US on the platform, all of whom had to be accepted after a due diligence process to get onto the platform. At the moment, CareNav is talking running pilots at a few hospitals in the United States, but the process of getting a new service in place and contracts signed could be an 18-24 month process.
With their current focus on babies in the NICU, the plan is to cover more and more subsectors of health so that all bases are covered: pediatrics, emergency medicine, pre- and post-op care, etc.
Hacohen hesitates at a question about the proposed repeal of the Affordable Care Act (Obamacare), clearly wanting to avoid a comment loaded with political implications, but she thinks the effect will only amplify the need for services like hers.
“The repeal only makes healthcare more inaccessible, at least that’s the way it seems. Under ACA, with a preexisting condition, you could still apply. I think the repeal of the ACA will make it more difficult to navigate and get accessible, affordable healthcare in the US.”
Of course, American healthcare is still far from the kind of system you find in the rest of the Western world. For all the bureaucracy often associated with socialized systems in Europe or Israel, the major difference remains that the burden to find care is actually more on the insurer or system itself, not the patient. The opposite is true in America.
“What we’ve seen in the US, the burden of inefficiency falls on the patient. It’s up to the patient to access and pay for care. In Europe and Israel, the burden of inefficiency fall is on the system. The system has a more vested interest in making the system more efficient.”
“Let’s say you have this pain and you keep ignoring it and you don’t know what doctor to go to and you don’t want to take off work. You end up in the ER,” Hacohen explains. “If you end up in the ER in Israel, you have insurance that pays for it. In essence, the government pays for it. In the US, you get a bill. You could default on the bill, but it falls on the person.”
Part of the problem owes to low “health literacy” among patients. Up to 47 percent of Europeans have insufficient knowledge of their own healthcare system and plans, as in they really don’t know where to go for some basic issues or what to ask. CareNav sees an opportunity to ameliorate that problem as well, as patients ge used to the idea of talking to a guide offered by their service providers via consulting companies like CareNav. The hope is that the effect of a more informed patient is becoming a permanent one.
“That is what we define as a problem with patient navigation. Like I said it’s early and we not only have to prove ourselves as a startup but as an industry. We intend to ride a big wave of patient navigation.”