OCTOBER 16-18, 2019



October 16-18, 2019 | Boston, MA

We Need Patient Engagement in Health IT Design

By: Amanda Greene, a passionate healthcare activist and advocate

“If you think we can’t change the world, it just means you’re not one of those who will.”  This quote by futurist Jacque Fresco is one that inspires me to share my patient experience and advocate for involving patients, especially those living with chronic conditions, as the healthcare system hopes to create an environment where healthy habits can improve treatment and produce healthier communities.

According to Dr. Lisa Marsch, an expert in behavior change at Dartmouth College, “The first step to changing your behavior is to create an awareness around what you do regularly.” Recognizing the need to change the current methodology and the desire for better results by including patients is the first thing those designing for the healthcare space should do.  The paradigm shift is happening; you can either embrace it or not. I feel that the future of successful healthcare design will involve and include patients. From the initial concept design, and at every step along the way, I believe that the most successful new technologies and applications will be the ones that thoughtfully consider how the end-users (patients, providers and caregivers) will engage with the technology. 

Healthcare designers can develop and implement a new way of collaborative creation that incorporates patient experts’ consultation on the latest projects, from brainstorming sessions to beta testing and feedback. This new way of design thinking can potentially increase success and lead to huge improvements in public health while addressing the current system’s flaws.  This big idea is groundbreaking; simply reframing the design process by including patient experts can immediately benefit companies and the communities they serve.

Developing a framework that includes patients as collaborators in the health IT system requires a commitment to be open to change and a willingness to try. There are sure to be a few stumbling blocks along the way but the innovation and impact on public health is worth it.  People who are living with chronic health conditions are truly the experts; inviting them to participate in the development process and work with the design teams should be commonplace.  By implementing the patient experts’ experience and insights, many designers will be able to create a better version of what they are working on because they will understand how their consumers will use and engage with the technology.

Dr. Leonard Epstein, who studies behavior change and decision-making at the State University at New York at Buffalo, explained how creating healthy habits can improve our wellness: “You can learn to postpone immediate gratification through episodic future thinking or vividly imagining future positive experiences or rewards.” Many might ask why should we try something new or say that change can create fear, but if nothing ever changed there would be no butterflies. I have high hopes for the future and that Health IT companies will soon be filled with patient experts as consultants, advisors and partners in future healthcare innovations.

Jacque Fresco, whom I quoted at the start of this post, also said, “In order to design a future of positive change, we must first become experts at changing our minds.” With that thought in mind, as we are looking forward to the 2019 Connected Health Conference in Boston this fall, I hope to discover that companies and technology leaders are empathetic and understand that true patient engagement goes beyond buzzwords and incorporates cooperation. By incorporating patient experts into the development, a collaborative process can unfold; together we can design healthier habits and create better outcomes.

Greene was recently honored by the Lupus Research Alliance as a "Lupus Luminary." She is currently part of the International Pain Foundation team working on the 2019 I Pain Summit that will be held this November at UCLA. Follow her on Twitter @LAlupusLady or on her website.

Secure Your Seat

Be a part of the conversation!


Register Today