The Office of the National Coordinator has asked for input as they develop strategies to “Empower Consumers to Better Manage Their Health through Health IT”. To kick it off, they are seeking public response to specific objectives, including:
Objective A. Engage consumers in federal health IT policy and programs
Objective B. Accelerate consumer access to electronic health information
Objective C. Foster innovation in consumer health IT
Objective D. Drive consumer-provider electronic communications
These are a great start. To get to truly meaningful, ONC should use its position to get to truly transformational. The aim of electronic records in every clinic is a must. As the focus now shifts to patients and caregivers, we need thinking that’s way out of the box. This opportunity is unprecedented. With Health 2.0 at our disposal, let’s not look at our electronic records as partly “facing consumers”, let’s figure out how to design our health records and exchanges in the context of patients’ lives. I’ll offer modified objectives.
A. Practice participatory design in federal health IT policy and programs.
Rather than a media campaign to “help consumers understand” HIT policies, stakeholders should gather more information about consumers, and practice participatory policy design. Patients and caregivers want policies that give access to all their information and allow them to contribute to their health record. We need to leverage untapped consumer power to drive policies that make sure we go beyond face-to-face encounters. Healthcare won’t be transformed until we get away from the tyranny of the visit. Here’s our sweet spot: both clinicians and patients want telephone and online care mainstreamed. Yet another example of how consumers are the #1 underutilized member of the team.
B. Ensure consumer access to all health information and ability to input information.
Patients can get access to notes, but rarely do. Electronic access will be ground-breaking (See Open Notes post). Yet we need more than unidirectional pushing information out. We need sea change, where patients and caregivers enter content directly, not have it transcribed by clinicians. Valuable patient-centered data, such as: a picture, a nickname, what clinicians should to know about them, their social support, self-reported use of medications and health risks, and whether they agree or disagree on problems and assessments. Yes, this will alter our notes, but what’s wrong with that? (see next objective) Patients and caregivers can work with HIT stakeholders about how notes should change and where greater accuracy will be gained if people input their own information.
C. Use consumers and other HIT users to transform how we document and deliver care.
Let’s think Blue Sky and use this opportunity to change how we use HIT to interact with patients, how we document interactions and share information. Let me offer an example. I work with internal medicine residents. After a clinical encounter, they “present the case”. I’ve heard the same thing for over 20 years: a 53 year old woman with diabetes and hypertension.…a 79 year old man with heart failure and depression who frequently no-shows and is non-compliant. I often ask “context” and perception questions — Does he live alone? Is there a support network? Does he use the Internet? What does he think he has? Often these questions haven’t been asked. While the resident sees value in these questions, it seems there’s little time to ask so many. Meticulous notes are written, which focus on diagnosis and treatment. Who is the patient? Mostly, our notes ensure proper documentation for coding and billing. We need patient-entered information that increases our knowledge and builds trust that’s so critical to outcomes. We need to re-structure our notes to gain meaning for everyone – clinician and patient. (who reads the social history, anyway?)
D. Get all the right people on the bus to tackle consumer engagement.
We have lots of work to do here, and focus on people and behavior. It’s easy to think about cool tools and widgets to “get patients more engaged”. We need to work with non-IT folk, like anthropologists and behavioral and social scientists, to crack this nut. There’s great science on how to engage people (see post on bringing behavioral scientists into HIT development and adoption). Make it fit into people’s beliefs. Provide things people want. Meet people where they are. Make sure shared decision-making really means people participate. Importantly, don’t believe people “will get engaged” if they just take advantage of HIT. Finally, let’s go outside medicine and healthcare. We have parallel consumer-engagement-and-information grid development happening in energy and sustainability. I posted about this recently. These worlds should collide and conquer together. I’m sure there’s other parallel intelligences happening.
E. Drive the provision of services with greatest consumer value, while mitigating disparities in care.
ONC Objective D. identifies secure email and telemonitoring as serving to engage consumers in their care. Slam dunk. These tools have been shown to improve satisfaction and health outcomes. While systems should support clinician participation, we should think more about how we can drive consumer demand which in turn can drive the use of services. Above all, our policies need first to support (see A) offering these services. Our educational programs must ensure clinical staff understand appropriate use of these tools. Our marketing programs must learn about value to the consumer then increase awareness. Our built environments must be modified so all patients and caregivers can learn about consumer HIT and use it to their advantage. Our researchers must prove we’re not creating more disparities as some but not all patients access these services. And we must put great innovators in our communities so that these likely disparities are minimized because point-of-care provides services of comparable quality.
Thanks, ONC, for asking. Let’s make sure the consumers are co-piloting the ship as well as helping pick the destination.