The range of options is staggering – my iPhone coughed up 52 applications for medication reminders just now – but most of us don’t make use of the (often free) high-tech help available to us. There are hundreds of websites and portals to help us monitor our diets, physical activity and blood sugar, talk to our doctors by e-mail and understand our test results. Apps can help us watch for drug interactions, unravel our test results, adjust our hearing aids and track our symptoms. Devices can monitor whether our mom is moving around her house this morning or continuously monitor our vital signs.
Interesting ideas. Modest pickup.
In an essay published in the May issue of the American Journal of Preventive Medicine supplement “Cyberinfrastructure for Consumer Health,” I make some observations about why this may be so, based on my experience as a person who daily responds to an exciting variety of chronic and acute conditions that ebb and flow in my body. My remarks are addressed to those who fund and develop devices and Web-based tools to help those of us with chronic conditions better care for ourselves.
Briefly, I encourage them to:
- Recognize and aim their efforts toward technologies that help us fulfill the specific new responsibilities and tasks we find challenging in our efforts to live long and well with our conditions.
- Hurry up with those interoperable electronic health records (EHRs)! Until EHRs are up and running, we are the ones responsible for doing all the getting, sending and schlepping of our records. Often we don’t realize this; sometimes we forget and make mistakes.
- Test those apps out on us. Ask us if the problem in question is one we care about. Check to see if the technology is easy enough to use so that it doesn’t add to the burden of caring for ourselves and our loved ones.
- And how about if those new devices and apps are tested out specifically on those of us who stand to gain the most from a low-cost technical fix — those who are older and who have multiple chronic conditions, not Web-savvy people you have recruited online.
My essay concludes with:
I urge developers, funders, evaluators of health information technology (HIT), and health professionals all to remember the context into which new HIT approaches enter: Caring for one’s chronic conditions is a tedious, uncomfortable lifelong job. Cool, cute and interesting programs and devices that help us monitor our blood pressure or remember to take our pills seem like they should break that tedium and attract our interest.
And indeed, many of us with chronic conditions are fun people. But keeping ourselves alive and out of pain is a serious business. We want to spend as little time as we possibly can occupied with the drudgery of caring for ourselves. If we are going to use a new website or device or program, we want it to be easy. We want it to save time, not take time. We do not want to have to learn a whole new technology on the off-chance it might help us out. And we do not want it to be fun. We want a technology that is efficient and useful—one that will help us take care of ourselves so that we can live lives that are fun.
Jessie Gruman, PhD, is the founder and president of the Washington, DC -based Center for Advancing Health. She is the author of Aftershock: What to Do When You or Someone you Love is Diagnosed with a Devastating Diagnosis. She blogs regularly on the Prepared Patient Forum.