I recently gave a presentation at HITLAB’s annual Innovators’ Summit, “Digital health in the age of patient-centered care.”
Those of us in health services research right now, whether we are in tech or not, are used to seeing, reading, and hearing about digital health constantly. We are, in fact, in an age in healthcare defined in large part by advances in digital technologies and the promise they hold for dramatically improving safety and quality.
But alongside digital is another movement that is front and center at this moment- that of patient- and family- centered care. Patient- and family- centered care is defined as: “care that is respectful of and responsive to individual patient preferences, needs, and values” (IOM, 2001, Crossing the Quality Chasm). Decades of work by patient and family advocates and those who support them have delivered an era in healthcare of unprecedented focus on the needs and priorities of patients and families, and a subsequent shift in healthcare toward incorporating patient- and family- centered principles into services planning and evaluation activities.
Patient- and family- centered care principles vary slightly depending on your source, however, the key components of the philosophy are guided by -
- Respect and dignity
- Information sharing
- Participation and;
- Collaboration
Healthcare professionals are hard at work, incorporating these principles into the design, delivery and evaluation of services. I gave this talk at the Innovators’ Summit because I see these two parallel epochs—digital and patient-centered care- as necessarily intertwined.
In order to see the promise of digital reach its full potential in health services, it must be understood and built out through the current lens of patient- and family- centered care. The warm fuzzy quality historically associated with all things regarding patient- and family- centered care seems incompatible with the impersonal nature often attributed to the technological. But these two trends are, I would argue, not only complimentary but necessary to one another for each to make good on its promise to improve quality in healthcare.
Our summit included digital health startups, excited about their technologies and eager to make a difference. To achieve their goals, these innovators need clear insight into patients’ needs and priorities. When they include the patient in the process of innovation and creating new products, they will be more successful. Cutting edge in this day and age is not only about harnessing the latest technologies; it is harnessing those technologies in ways that enable healthcare and services that are truly patient- and family- centered.
Digital health technology is so exciting precisely for its capacity to enable patients and their families to participate in the ways outlined by the core principles of patient- and family- centered care. Digital can enable empowerment-- for providers and other stakeholders as well as patients. But, as we in health services research are finding out, the best innovators are those that have, at their core, a deep understanding of what matters most to patients.
And so my talk at the Summit ended with a call to action for all in digital health but particularly in this case start ups to be not only innovative with regard to technology but to be truly cutting edge with regard to the adoption of patient- and family- centered principles and perspectives into their work. This means not just a post product development focus group or two, but involving patients and families from the very beginning of technology and product development. It means including patients and their families on teams, at all levels of an organization. This kind of inclusion is happening more and more as the value created by including patients becomes clearer.
Zansors has experience involving patients and families into their product development processes. This is critical. We have to harness patient and family perspectives into our innovation processes to make better, more valuable products. We need to hear and read about successful models of patient- and family- participation in the digital health space so that others can learn from and improve upon current methods for operationalizing patient- and family- centered care principles into digital health innovation.
Sara Kuppin Chokshi is a public health research professional with experience in health services research and digital health. She is a current research associate at HITLAB. Sara is a senior family advisor at the Sala Institute for Patient and Family Centered Care, where she currently serves on a variety of quality and safety committees at NYU Langone, representing the key perspective of patients and families. Sara completed her postdoctoral research fellowships at both Hunter College and Columbia University. She finished her doctoral studies in Sociomedical Sciences at Columbia’s Mailman School, and holds an MSPH in social and behavioral sciences applied to health from the University of South Florida’s College of Public Health as well as a bachelor’s degree in sociology from New College of Florida. Find her on Twitter @skuppinchokshi