Healthcare stakeholders — from providers to payers to pharma and medical device companies — are more and more starting to include patients in the design process for new innovations and initiatives. But while that co-design is a good first step, it’s not enough, experts at the Connected Health Conference in Boston last month argued.

“Every health innovator wants to maximize their market success,” Dr. Roxie Mooney, CEO and Healthcare Commercialization Strategist at Legacy DNA, said in a presentation at the event. “They want to increase their chances of success in bringing their innovation to market. The problem is that we often leave the patients out of the innovation process. … We need to include patients early, we need to include them often, and we need to include them in all five phases of the co-creation process.”

Mooney lays out the five phases as co-ideation (the initial brainstorming of the product), co-design, co-evaluation (exploring the different possible ideas), co-test, and co-launch (involving patients in the marketing process).

This level of patient involvement isn’t easy, Mooney said. It involves new levels of investment. Patients can’t just be brought in for a few feedback sessions. And they need to be paid.

“I’ll just tell you that lunch and snacks are not going to cut it,” Mooney said. “You don’t get what you don’t pay for. … So the key here is going to be making this a part of your budget and your planning early in the process.”

Mooney was joined by a panel of many different kinds of healthcare stakeholders who talked about their own experiences with co-creation.

Grace Cordovano, a patient leader at Enlightening Results, echoed Mooney’s sentiments about paying patients, and explained that doing so isn’t just right, it’s necessary to get accurate insights.

“When you don’t have a budget and you don’t compensate patients, …you’re introducing bias and lack of diversity into your model, because only the people who can show up and give freely of their time will show up, which is a niche sample of the population you really need to be sampling,” she said. “So keep that in mind as you’re trying to plead the case or craft the budget for this kind of work.”

Panelists addressed some of the barriers to this kind of change, including reticence from management.

“I think it’s really important that you’re proactive and not reactive and you bring your stakeholders along with you through your ideation and planning involving patients inthe  design, co-creation, etc,” Kelly McKee, head of patient recruitment and patient-centric innovations at Vertex Pharmaceuticals, said. “When you bring along individuals through that journey with you and they’re part of the solution, they’re more likely to say ‘Ok, let’s try this’, instead of ‘No, period.’”

Gilad Jacobs, CEO of Normatec Industries, shared an anecdote about dealing with a manager who thought he knew best and didn’t want to solicit feedback, one of the biases that often prevents organizations from engaging in co-creation according to Mooney.

“I looked at him and said ‘Mike, you think you know what it is, I think you’re onto something, but let’s confirm it. Let’s bring some people in and see where that trends.’,” Jacobs said. “He was wrong. But we did it in such a way that he was able to save face and be part of that co-creation process. And he became more of an advocate of both the company and the product line at that time.”

Finally, bringing the patients themselves in can sometimes lead to an 'aha moment' about the importance of co-creation, panelists said. Stacie Ruth, cofounder and CEO at Airehealth, shared a story that illustrated that point.

“During one of the early co-creation sessions we had a mom of an asthmatic kid and she’s also an advisor to the company,” Ruth said. “And we had a physician there as well, our pediatric intensivist, and a question came up about ‘What happens when I’m given an ‘as needed’ prescription for my child with asthma? Am I supposed to know when it’s ‘as needed’? And they had a little healthy dialogue back and forth. And he walked away with a completely different [mindset] … So there was an enlightenment in that moment that came from a mom.”

Even when all participants are on board, co-creation is complicated.

“You can’t just go out and find some different kinds of users, interview them, and then magically bake that in to how you bring products to market. You need to have a firm plan about how you’re going to (A) recruit the right types of people and then (B) leverage any data that you get in order to inform the product that you’re building,” said Carson Pickens, executive director of product management at Aetna.

“To me there’s a big component around how you structure design organizations and engineering organizations in order to factor in this kind of feedback. I would say the biggest change we made on the Aetna side in order to actually operationalize this was to really put in place dual-track development. We stood up a design organization that could work one quarter ahead of our engineering organization and it allowed them to really do the kind of generative research that we needed to do in order to get things right.”

While truly bringing the voice of the patient to the process of creating new health innovations isn’t easy, it can be rewarding for both the company, which can avoid pitfalls like low adoption or poor usability, and the patient, who will often appreciate having a hand in the evolution of their own care.

“People really appreciate a chance to sit at the table and make their life better,” Andrew Hopper, panel moderator and CTO of WeGo Health, said. “Being authentic and transparent is an amazing way to get valuable insights.”