Patient advocates: We can help innovators build digital health tools

From design to validation to deployment, any novel health tech innovation comes with a number of challenges and considerations that requires a coordinated effort from every stakeholder.
By Dave Muoio
11:15 am

Despite the best efforts of the tech sector, changes in medical practice don’t occur overnight. From design to validation to deployment, any novel health tech innovation comes with a number of challenges and considerations that requires a coordinated effort from every stakeholder.

But while care providers, payers, and device makers all have a role to play in the process, it’s the patient who has the most to gain, and lose, from new treatment technologies. With more resources than ever now available to help the average patient take control of their care, some advocates are urging the industry to incorporate more patient voices into daily care and the development of new digital health tools.

That’s because patients can help innovators build the right tools and, in turn, patient can also be critical in aiding doctors trying to get others to adopt digital health apps and devices to take charge of their own care.

Patients can help remove barriers to engagement

“Whatever it is that the new innovative tech is for, you need to try to at least involve a few patients at the beginning,” said Dominique Goodson, a patient advocate with firsthand experience in sickle cell disease.
Goodson’s is a familiar call -- and common sense.

Getting user feedback early in software and other product development cycles is a proven tactic for success and it should be happening more when innovators build digital health tools. At the very least, it can help hospitals avoid spending money on apps that patients and clinicians ultimately refuse to use because they don’t like the way it works.

One benefit to involving patients is that many are generally receptive to new tools that could minimize numerous complications that come with managing a disease, Goodson said.

This is especially true for those whose conditions come with substantial, long-term burdens to quality of life, explained Steve Van, another patient advocate who has lived with diabetes and a resulting heart condition for several years.

“Imagine having the worst flu of your life, and walking around with that every single day. Wouldn’t you want a solution?” Van said. “I walk around with the chronic condition every day of my life, there’s no pill or shot that I can get to eliminate it, so the best I can do is manage it. What I want are better tools to be able to manage it.”

With that being said, there are a number of roadblocks keeping patients from fully embracing the novel. Chief among these are practicality and cost, Goodson said, with the latter especially likely to halt engagement with a new tool before it has a chance to prove its worth.

“Even if it’s an innovation that’s going to change everything for them, patients aren’t going to use it strictly for the cost,” Goodson said. “I know when I tell other sickle cell patients about the voice app, the first thing they ask is how much does it cost.”

A more deeply seated fear for many patients is how the growing emphasis on data collection and sharing might possibly work against them, Van said.

“From a patient point of view, what I was most worried about was someone doing something with my data that might hurt me; that it might lead to someone not caring for me because of the data that they get,” Van said. “There’s also the darker side: you have my data, you’re going to use it against me. That’s a real concern, and I think it needs to be on the table.”

How patients can help doctors get other patients to try digital health tools

Both Van and Goodson said patients will always have some concern over whether or not they are being used as a “guinea pig” for an ill-fated experiment.

Still, so long as the innovation is relevant to the condition —  for instance, telemedicine being used only for conditions that do not require in-person care — and the risks are well communicated, they didn’t see this point as a major holdup for patients in search of effective treatment.

“If they knew this wasn’t 100 percent going in, and it didn’t hurt them or create some kind of really bad medical situation, they would still try out the next solution. I know I would,” Van said. “I didn’t get to this point myself trying just this first thing, and that thing worked 100 percent. I think we’ve been making these kind of choices for a long time."

In fact, strong communication and relationships between patients and their care providers was cited by the advocates as a key factor in how well a new treatment or innovation is received.

“If it’s me, I’m questioning a number of things, like how this is actually going to make things better for me, what exactly is it supposed to do, if you were in my situation, would you use it. And then if all of the questions that I have are answered to the point I like, then I’m willing to try it,” Van explained. “I might compromise though — you might say six months, I’ll say three months and reevaluate — but a lot of times it comes down to the relationship the patient and doctor have. If it’s not a good relationship, the patient is going to be iffy about doing it.”

This kind of relationship may not always be the case between doctors and patients, but new tools and resources are allowing more patients to become active participants in their care, Van said. Specifically, he cited his own experience of accessing and sharing blood sugar data collected through a monitor, and how that information has now become a point of reference between both parties.

“I think it’s moving from a monologue, where a doctor tells you what to do, to a dialogue, a back and forth. It becomes having an understanding of what is available in terms of new technology,” Van said. “I often think of the way that my doctor and I used to talk. He would talk doctor, I would talk patient. He would talk in these technical terms … we weren’t able to communicate with these different languages. The data gave us a common language, but in order to get my understanding of what new technology is, it takes a dialogue.”

Patient-doctor relationships aren’t always a given, though, and ultimately the decision to try new technologies should always be up to the patient, Goodson stressed.

With this in mind, providers who aren’t having luck persuading a patient through direct communication should not be afraid to bring their other charges into the conversation.

“Get another patient who has been using the innovation, and has positive reviews,” she advised. “Have the doctor talk to that patient and say ‘Look, I know this has helped you a lot. I have a patient who is iffy on it — if she says it’s okay to come in and talk with you, would you mind coming in to speak to the person and explain how it helped you?’ Because a lot of times patients are willing to listen to another patient rather than the doctor that they don’t trust.”

Focus on Innovation

In September, we take a deep dive into the cutting-edge development and disruption of healthcare innovation.


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