Health care is a tower of Babel. It’s the rare person who can translate across every part of health care. Some part of health care is a mystery to someone. Doctors often don’t understand the language or culture of the people they support. Caregivers often don’t really understand the person who they care for even if they love them. Who really understands another’s pain? People in one profession often don’t understand other professions. Few professionals or people at the center of care understand technology, policy, or insurance speak.
Here’s a stark example of the divide between the health industry (professionals, consultants, and information technology) and people at the center of care (patients and caregivers): For several years I have talked with anyone I can about a basic piece of information needed when a person has an unexpected health emergency in an unexpected place (an emergency room visit). What works for me when I’m in pain and what doesn’t? What works for me when I’m scared and what doesn’t? Every caregiver I’ve discussed this with says, Oh yeah. Absolutely. Almost no professional, consultant, or technology person has even understood the question. It’s like I’m speaking Klingon. As a parent you know when kissing the boo boo works and when it doesn’t. When they’re scared some want to be left alone, others want you to hold their hand, others respond to specific music. Some people react badly to a particular medication, some react well to very small doses.
I’m trying to understand this divide. Aren’t people in the health industry also people at the center of care? Why doesn’t the Continuity of Care Record (CCR) and Blue Button Plus include this basic information? (The CCR document is used to allow timely and focused transmission of information to other health professionals involved in the patient’s care – medications, allergies, previous surgeries, diagnostic history). It would be a challenge to figure out how to do this, but isn’t it worth it? How can we bridge this gap?