Creating innovative digital health tools for patients is pointless unless they actually use the app or device. But figuring out the “magic formula” can be tricky. That’s why savvy providers are turning to patients as the experts -- and many consumers are willing to work with innovation teams through the process, from design to deployment.

“For any innovation project, it is important to be focused on the actual users. For digital health solutions for patients, you want to understand the patients’ experience. For digital health solutions for providers, it is very important to understand the provider workflow and what their experience is,” Naomi Fried, founder and CEO of Health Innovation Strategies and former chief innovation officer at Boston Children’s Hospital, told MobiHealthNews. “Take some time to understand what their experience is and what challenges they are facing.”

Several experts interviewed for this article agreed on the need to involve patients as early as possible in the innovation process. That’s a start. The next step is figuring out how, exactly, to achieve that. Executives from Dana Farber, Partners, Beth Israel Deaconess and Northwell Health gave a look at what has worked for their hospitals.

Product development panels, qualitative research and patient workflows

While providers might have an expertise in treating a certain condition, living with that condition is a very different experience. Karen M. Fasciano, senior psychologist at the department of psychosocial oncology and palliative care at the Dana-Farber Cancer Institute, works with young people with cancer. When she began to develop the app she decided to seek the advice of patients.

“We all really worked together but it was their voice that was able to [make] the product from something that could have been a C product, based on clinical experience, to an A product, based on their experience of having cancer as a young adult,” Fasciano said at a recent event. “The product we developed would be impossible without patient engagement. I think it is important for me as a clinician. It also was something that helped me with my own burnout, to see patients engaged with a self-advocating way to make a difference.”

Many providers are now asking patients to sit on product development panels to hear feedback. Dr. Kamal Jethwani, a senior director of connected health innovation at Partners HealthCare, said he brings patients into the innovation fold straightaway. He noted that it is important to remember that patients have lives.

“The second thing that we do a lot of is observations and interviews and qualitative research and thinking about patient workflows. And that’s something new for our health system, we don’t usually think like that,” Jethwani said. “But really thinking about who are our personas? Who are our patients? What are their lives like? What happens in their life that we need to fit in with versus designing a system that they have to modify their entire life to be able to use? That’s something that in the early stages is really important to understand. Because if you don’t consider that, you’re not going to develop something that works for them.”

Jethwani noted that needs and engagement style varies based patient population. It is also important to understand patients’ personal motivations.

“One [example] is an intervention that we had designed for improving physical activity in people who have diabetes. The whole idea was that people with diabetes can do well and have better outcomes if they’re physically active, but usually that’s the hardest thing to change,” Jethwani said. “So what we did was we designed a personalized intervention that took into account people’s state of motivation, etc. and sent them personalized messages based on different things.”

In this case providers found that personalized messages worked well. They also noticed that activity levels decreased during bad weather so were able to send messages that would motivate people to work out more on the sunny days.

The involved patient

Many practitioners note that patients are also starting to become more involved in their healthcare, creating new opportunities to try out different innovations.

“When you’re informally testing something, physicians almost uniformly will select people that they know will be open to trying things out,” Joe Kvedar, vice president of Health Partners Healthcare said. “And that’s one of the reasons informal tests aren’t very valid on the scientific level, because there’s a selection bias. But in the beginning when you’re just trying to get a flavor for how something works and will it disrupt another workflow, that’s a useful filter that most clinics.”

Dr. John Torous, who heads up the digital psychiatry division of the department of psychiatry at Beth Israel Medical School, said many patients like to keep track of their progress.

For example, Torous had a patient with schizophrenia who used a spreadsheet to track if his medication was working by monitoring the drugs he was taking in relation to how many voices he was hearing everyday.

Touros and his team have since worked on new digital tools for patients to track their symptoms and progress. This fall his team launched two digital mental health apps. One, called LAMP, lets patients answer surveys, play brain games to check critical thinking and concentration, and enter wearable data. The physician can then talk to the patient about their data when they are at an appointment. For example, a patient says where they are when they were taking the survey. So if a clinicians sees that when they take the survey at school or work they report more anxiety, the patient and clinician can talk about it.

“Relapse is only the first part of it. But can you imagine the world where for mental health treatment we can report cognition from these [phone sensors] and physical activity and we know what environment you are in,” Touros said. “If we have all that information we can use and have a new way to think about care, wellness, and treatment so we’ve developed our own app called LAMP.”

The other app being deployed by Touros and his team tracks digital biomarkers. That means a patient can give a provider access to phone information, such as if they are answering text messages, GPS of their activities and phone call records. However, providers do not have access to the contents of the text messages or phone calls.

“Sometimes the people that we work with have the best answers and solutions,” Torous said.

Understand that patients are consumers

Not only are patients becoming more engaged in their healthcare, the mindset is changing. Hospitals are now giving these innovations to consumers, rather than patients.

“The connection between healthcare and the consumer is behind. Healthcare in general has never been consumer-focused in the way it should. They have been patient-focused,” Michael Dowling, CEO and President of Northwell Health, told MobiHealthNews. “There is a subtle difference. Patients, when you think of a patient and when providers traditionally think about the patients they basically had this view 'I’m the doc, I’m the nurse. I know everything and you are the patient and you are basically subservient. So I’m going to tell you what you should do.' A consumer is knowledgeable. They have more access to information. They are more technologically savvy… Healthcare is making the transition from the pure traditional model of patient to the world of patient/consumer.”

But as the patient’s role begins to change this also brings opportunities. Fried said consumer products that are already on the market could help inform the healthcare sector.

“I think that healthcare can learn from the consumer world the importance of placing the consumer first and a preoccupation with the consumer experience and their needs. Healthcare should recognize that many consumers of their services have choice and can take their dollars elsewhere,” Fried said. “Our industry is moving in that direction—slowly. We need to remember that the patient is really at the center of healthcare and we need to be preoccupied with their experience. … We should focus on clear and convenient communication for patients. There has traditionally been a lot of focus on the physician’s experience in the hospital setting. I think we need to engage more with the patient and better listen to their voice.”