Have you ever sat on your bed after being discharged from a hospital stay and suddenly felt – along with the relief of being home – overwhelmed by what you have just been told that you and your loved ones must now do? Similarly, have you ever walked out of an appointment with your clinician and said, “HUH? Exactly what did we agree I am going to do about this problem? I can remember three things, but I know there are others.”
I have experienced both these responses more times than I can recall, and I am not alone. These two periods immediately following our clinicians’ hand-off of responsibility to us are critical to our ability to benefit from their care and advice. From those points on, our own actions become key determinants of our progress.
And there is evidence that we often fail to take those actions, thus contributing to preventable suffering, poor outcomes, wasted resources and squandered time. While our generally low level of engagement in our health care may in part be due to lack of interest, I suppose, much of our lack of participation stems from our inability – and our clinicians’ – to anticipate and overcome all the obstacles we face in following those recommendations.
“Disasters teach more than success,” writes Henry Petroski, in his recent book To Forgive Design: Understanding Failure. Petroski is a professor of civil engineering at Duke University who specializes in failure analysis and has studied in depth big, epic failures like the Deepwater Horizon oil rig spill in the Gulf of Mexico, the meltdown of the Chernobyl reactor in 1986 and the collapse of the World Trade Center. Petrosky notes that each of these was rooted in an engineering failure that spurred innovation and forced engineers to backtrack to identify and fix deadly flaws.
Patient safety and health care quality improvement initiatives often use Petroski-type “failure engineers” to learn how medical errors might be prevented by implementing NASA-type review systems, fail-safe measures, and checklists to reduce mistakes and improve health outcomes. So it is not surprising that more clinics, practices and hospitals are trying to implement two failure-prevention strategies aimed at sparking our active engagement in our care: after-visit summaries and hospital discharge plans. Both of these are part of ACA health reform models and incentives.
After-visit summaries – hard copy or online – include our diagnoses, problem list, medications, and follow-up steps and are usually given to us at the end of an outpatient visit. Similarly, many of us are being sent home from the hospital with discharge plans that now consist of voluminous information about how to care for ourselves and when to seek help.
Hallelujah! How could we possibly remember and follow through on all of the recommendations for next steps without an aide-de-memoir? It’s great that attention, technology and policy muscle is being expended to make sure we are routinely provided with both tools.
But I’m afraid that this is just not going to be enough. Dr. Petroski writes that, “No matter what the technology is, our best estimates of its success tend to be overly optimistic,” and in this case, I agree.
Because most of us simply cannot anticipate the problems we will face in following the recommendations provided to us. We get home and questions arise about what we need to know and do. “Did you say *I* should make the appointment for the test or is your office going to do it? And if it’s me, whom should I call?” “The medication I’m supposed to put on my surgical site is giving me a bad rash. Now what do I do?” “I couldn’t afford the co-pay for this drug so I didn’t buy it. Can you prescribe a generic or cheaper one?”
Few discharge plans and after-visit summaries are interactive; they offer no way of easily and quickly looping back to someone who knows about our situation who can help us overcome the unexpected glitches and answer the questions that inevitably arise as we try to act on our clinicians’ advice.
Here’s what would help: In the past two days I have filled out two post-dining surveys from OpenTable (a sign that the summer heat is undermining all good intentions of cooking at home). And it occurred to me that it would be great if there were something like this that could provide the immediate guidance we need to participate in our care – at least for those of us who are always online.
OpenTable works like this: I make a reservation for dinner at one of thousands of participating restaurants through the OpenTable Website. I go to dinner, and, the next day, I receive an emailed survey that asks me to rate my experience on five dimensions linking me directly to the restaurant to register questions or complaints. I have always gotten a response from the restaurant within a couple hours of submitting a question or comment.
I like that OpenTable survey. It is quick and convenient. It allows me to revisit key aspects of my dinner – food, service, noise – and it invites me to communicate any concerns directly to the responsible party with a promise of a response.
An OpenTable survey approach adapted for clinic and hospital settings might help us resolve the questions that prevent us from acting and would simultaneously gather information that clinics and hospitals could use to understand in detail how the after-visit summaries or discharge plans failed to prepare us to care for ourselves. And it could guide efforts to improve them and improve our care.
OK. I know this is would be a heavy lift. Many practices and hospitals are still struggling to implement basic electronic health records systems … few EHRs already in place have a patient portal that is actually useful for us … monitoring and providing personally relevant answers to our concerns would take time of skilled staff … confidentiality and liability concerns lurk…someone would have to gather and analyze ratings data…those analyses would need to be used to tweak after-visit summaries and discharge planning as well as be incorporated into quality improvement processes …
But you’ve got to have a vision.
There is no way that any standardized process, checklist or tool will be able to take into account and respond to the myriad variations in our health, experience, ability and context. But this OpenTable survey offers a model for how supporting our engagement in our health care could be personalized when we need it most – when our actions are most critical and when we are alone and uncertain about what to do next.
Further, the OpenTable survey can shed light on how to prevent the quasi-, semi- and full-bore failures of current methods of handing responsibility for our care to us. This vision is consistent with the Institute of Medicine’s “learning health care system” but with the recognition of our critical role in teaching our clinicians how to better meet our needs.
The confluence of an increasing prevalence of chronic conditions due to an aging population and the growing number of treatments that we administer to ourselves means that these transfers of responsibility to us should be the focus of significant attention and resources. There are now incentives for such attention as payment to clinicians, practices and hospitals become tied to the outcomes their care produces – outcomes that simply cannot be achieved unless and until we have a fighting chance to follow the plans and directions of our clinicians.
“Success is success but that is all that it is,” Dr. Petroski writes. “It is failure that brings improvement.”
Jessie Gruman 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.