Imagine the following ideal health care scenario:
- A conversation with your doctor informed by the best medical evidence, your own patient data, your preferences, and your values.
- The information is available precisely when you and your caregivers need it to help guide a pending medical decision, at a time that makes the most sense in light of the ongoing work that your health care professionals and you, as a patient, are doing.
- The information is delivered in formats that are easily understandable by your care providers and by you—available to streamline simple decisions or to support the shared decision-making discussions needed for more complex decisions.
- In short, decision support specifically designed to help providers and patients make better decisions together.
This scenario is our dream for genuinely patient-centered clinical decision support, and it’s a dream we’re inviting you to share through the new special section in AcademyHealth’s open access, peer-reviewed journal eGEMs. Titled Better Decisions Together, the new section is sponsored by the AHRQ-funded Patient-Centered Decision Support Learning Network.
As the new Better Decisions Together section editor, I’ll help eGEMs provide a forum for ongoing research and practice in patient-centered clinical decision support. As an informatics researcher, working in close collaboration with health systems, I have studied patient decision-making and health literacy, as well as physician decision-making and health care quality. I’m eager to support the innovative use of technology to deliver better care.
However, my work has also given me a keen awareness of how information technology can sometimes make things worse instead of better. I’ve published on the heavy information burdens faced by patients trying to manage, share, and correct their own medical information, and on the well-established problem of provider alert fatigue stemming from deluges of interruptive alerts. Patient-centered clinical decision support (PCCDS) cannot succeed if it simply interrupts workflow with more and more complex systems of alerts and reminders. I believe that many of the most valuable innovations will come from novel ways to reduce complexity, not add to it, and from maximizing system fit to the work and cognitive needs of the people who use it.
PCCDS will also need to continue to improve how it involves patients as stakeholders and decision makers through better patient-provider communication. This includes all the various aspects of sharing information – from reporting history, outcomes, and symptoms to discussing preferences and values, as well as cost implications of medical choices. Providers must begin to work more closely with patients to generate and share data through portals, phones, and medical devices; understand and explain genetic information and other complex medical concepts; and receive output of decision support in the form of decision aids and educational materials. To accomplish these goals, PCCDS innovators will need to engage with health literacy, health numeracy, and usability challenges, as well the complex and variable ways patients do the routine work of managing their own health and illnesses within their homes and workplaces.
A major challenge is to meet the information needs of the substantial proportion of people who do not have a smartphone (nearly one-quarter of Americans) or use the internet at all (more than 10 percent in the United States). These less technologically experienced individuals are more likely to be poor and low in literacy or English proficiency. Because poverty is such a strong predictor of poor health, these patients are also likely to be in medical need. If we do not solve the challenge of engaging these patients in PCCDS, then PCCDS will leave behind many of the patients most in need of assistance, widening disparities instead of promoting health equity.
The best way to address these challenges is to create a forum for innovators, practitioners, researchers, and patients to share their findings, discuss their commonalities and differences, and learn from each other. Given the talent and resources we can bring to bear on these problems, I am confident that we can make a tremendous amount of progress by working together. That’s the goal of Better Decisions Together.
Our initial call for papers is now open. I can’t wait to see what we accomplish. Together.