Partners Health, UCB turned to patients when designing digital epilepsy support tool

By Laura Lovett
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Over a year ago Partners Health and biopharmaceutical company UCB teamed up to tackle a moonshot goal: make Boston the best city to live in for people with epilepsy. So the team decided that in order to design a digital health platform to support this task, it was vital to go to patients for input and ideas. 

“We want to be patient centric, but what does patient centric mean?” Dr. Kamal Jethwani, senior director of connect health innovation at Partners Healthcare, said on a panel at Mad*Pow's Health Experience Design (HXD) Conference in Cambridge, Mass. yesterday. “We didn’t want it to be where patients are involved or asked. We actually wanted patients to lead. So right off the bat, what we did was create an advisory panel. Our advisory panel was composed of a patient, a patient advocate, and a provider. This advisory panel was charged with leading what we do and how we do it on this product. So, we were going to lead the process, but they were going to lead the content.”

When coming up with the design for a tool, Jethwani and his team realized that there were some factors commonly overlooked by many clinicians. For example, expensive medication copays can block patients from getting the drugs they need. 

“Providers prescribe a medication with the best interest in mind. The patient goes to the pharmacy, realizes the medication is too expensive, and copay is something they can’t afford,” Jethwani said. “They are too ashamed to tell the provider again, so they go back home without the medication. On our side we have no idea the patient hasn’t picked it up. A week later there is another emergency room department visit and we are like, ‘we gave you the medication what happened?’ And that is when we find out what happened. The providers say ‘you should have just told me we have a generic that is pretty much as effective and is like $10.’ But that breakdown in communication and that break down of having that piece of information available to us when we are making decisions was something we heard a lot from out stakeholders.”

These miscommunications can not only be detrimental to patient outcomes, but also drive up the cost of caring for a patient. In fact, Jethwani said that the number of times a patient’s medication changes correlates to the cost of caring for that patient. He also said emergency and inpatient encounters nearly doubled if a patient’s medication was changed frequently. 

That’s why it’s important for patients to be able to have an honest chat with their doctor about what they need, he said, and every patient might have different preferences. 

“Would you prefer one adverse event over another?” Jethwani said. “That sounds terrible but for some people nausea might mean they never go to work and don't have a paycheck, but they would be able to tolerate dizziness. But never have I asked in a clinical interaction 'Do you want nausea or vomiting?'”

So the team came up with a simple platform doctors and patients can look at together that they call RefleX. The platform gives facts about medication price, insurance coverage, and side effects.

Patients on the advisory panel said this tool helped them feel more involved. 

“It was providing something very simple. Just the names of the medication, the costs, what can you expect from it,” Matt Schumacher, agility enablement lead at UCB, said on the panel yesterday.  “I think if we had sat down over a table and decided what we were going to provide it would have been a lot more bells and whistles and craziness to it. And when we think about the 'why' behind this, it was really around epilepsy. There is the loss of a lot of agency [for epilepsy patients]; sometimes you can’t drive your car. You might have to change your work situation. So the fact that you are given, I call it the New England conversation, about what to expect and actually provide some of your feelings about what you liked there ... [makes you] more likely to persist.”

Oftentimes people living with epilepsy didn’t even they know they had choices when it came to medication. 

“Some of our patients came back and said ‘oh there are 30 agents,’ 'I had no idea when they put me on [a medication],' 'I thought this was the only drug possible and if I didn’t take it I had no other option,'” Jethwani said. “Even that piece of information was so important in being able to say 'If I don't do ok on this, that is fine. I have 29 more chances.’ That was so simple, but we didn’t even think of that.”

Right now the companies are preparing to implement their strategy in a pilot study, the panelists said.