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Why the Movement Needs a Breakthrough, and How You Can Help

Tyson OrtizGuest post by SPM member Tyson Ortiz (right), a highly committed member of SPM who works in organizational culture change. His previous post, How I became an e-patient: through practice, with coaching (using Lean on the patient side), gives more of his family’s background and his motivation to grow this movement. Tyson will lead SPM’s upcoming membership program.

I joined the Society for Participatory Medicine because I think the movement for patient engagement is falling far short of its potential, the need is now, and I intend to help.  Despite all the encouraging signs of this movement’s progress, I assert that in the area of healthcare where patient engagement is most vital – the real-time relationship between a patient and their clinicians, now – progress has been spotty.  I’m writing to illustrate the problem and ask you to join us in pushing this movement to and through its tipping point.

The state of our movement

The many efforts over the past decades to promote some form of patient engagement have made great progress.  I have that progress to thank for the fact that my wife and I have been able to successfully manage the care of our medically complex four-year-old, Michael.  Through our journey with Michael over the past five years, including many surgeries and hundreds of days spent inpatient at multiple centers across the U.S., I’ve found every center proudly and publicly embracing the ideals of patient engagement in one form or another.

Yet something is wrong.  Personally, I’ve experienced more stress from the friction of trying to be engaged in my son’s day-to-day care than from his actual medical condition and the long line of life-threatening complications that it has produced.  As successful as the movement has been, at the front lines of care I’ve found that the classic professional model – which doesn’t at all value an engaged patient or family member – is alive and well.

In a moment I’ll share a recent example.

It seems that the patient engagement movement’s broad progress has largely been tangential to the front-line patient-professional encounter, yet that encounter is where true patient engagement either lives or dies! Satisfaction surveys, advisory councils, patient web portals, smartphone apps, awareness classes… though perhaps necessary, these have proven insufficient to overthrow the classic professional model.

Even the progress made to enable patient engagement within the clinical encounter – such as family-centered rounding – has had limited impact toward creating effective patient engagement.  I’ll tell a story to illustrate this point – just one of many such stories from Michael’s journey – then I’ll close by suggesting something concrete that we can do to move forward.

“Patient Engagement” is easier said than done

“Well,” the Fellow said slowly, “the guideline for Diuril is ten milligrams per kilo, and I’ve never used less… so I wouldn’t be comfortable going down to four-per-kilo.”

I’ve got a tendency to defer to experts, but watching your three-year-old lay in an ICU bed struggling through kidney failure has a way of motivating you.

Several days before this discussion with the Fellow, I had realized that the dose of Diuril being used to keep Michael’s kidneys working was more than twice the dose we’d been using at home.  This observation drove me to ask around a bit, and someone on the medical team told me that Diuril is a “threshold med” in that it was only necessary to use enough to get the desired effect, and that giving more didn’t help.  From monitoring the results of labs taken in clinic over the previous several months, I knew that excess Diuril was hard on the kidneys – so I suddenly felt that we might be giving excess Diuril and contributing to Michael’s kidney crisis.

I presented this argument to my son’s primary cardiologist, who agreed that we could try lowering the dose to the four-per-kilo we’d used at home.

Unfortunately this decision never made it to the ICU team that writes the daily orders. Each day in rounds, as the horribly elevated kidney labs and daily plans for diuresis were discussed, the attending physician would politely entertain and tactfully side-step my suggestion that we reduce the Diuril dose.

See my point?  Despite the best intentions of all involved – despite literally being told that I was “the most important member of the care team” –  the engaged patient/family perspective held little value in these clinical encounters.

In fact, my perspective was essentially ignored: my reports of the lower dose working at home, my assertion that the primary cardiologist had agreed, and my assurance to watch like a hawk from bedside to make sure the lower dose was still effective – nothing I said seemed to matter.  My questions and suggestions were consistently met with blank stares – which I’ve come to recognize as a sure sign of weak skills for co-producing care – and as my input didn’t fit with the attending physician’s paradigm it was simply answered away.

I decided to act

For days I accepted the situation.  I told myself that these professionals knew what they were doing, and I didn’t. Although the primary cardiologist had agreed with my idea, they hadn’t felt strongly about it and I had the sense that appealing to them to intervene would only be asking them to encroach on the ICU team’s turf. And in any case, Michael was in such tenuous shape that I was unwilling to push for anything that might be unsafe. Yet as the days passed with Michael continuing to struggle, it became apparent to me that none of us truly had the right answer.

So by the time the Fellow gave me her explanation about the textbook dose – which, to her credit, was the clearest explanation anyone had offered in denying my request – I was no longer feeling deferential. I got pushy, probably a little rude, and thankfully someone in rounds decided to back me up. The Diuril order was lowered to four-per-kilo.

It turned out that the smaller dose was still enough to be effective, and the next day Michael’s kidney labs finally turned around and started improving!

I don’t know whether the Diuril change that I forced truly made a difference. I do know that at that point no one knew whether Michael would be going home, and yet these days I look forward to seeing his sweet little mischievous smile each day when I come home.

This medical center’s website boasts its Family Partnerships, inviting families to get engaged in their child’s care at the level they choose.  This center is proud, justifiably, of its accomplishment in achieving family-centered rounds. Patient/Family Advisory Councils abound here.  The center sits in the epicenter of healthcare reform and improvement in the U.S., located just a few miles away from the influential Institute for Healthcare Improvement and its compelling lessons in Person- and Family-Centered Care. I’ve been to enough centers to say that this center is truly superior – in its technical capability, in the high caliber of its people, and in its effort to engage patient families.

And yet it takes me almost a week to make an obvious change to a med when my son’s life hangs in the balance. Why? From my professional work in process improvement and culture change, I think I know the answer: It’s a mutual inability to collaborate – we both lacked the necessary skills/tools.

It’s time to change that.

Now is the time to take action

As patients and professionals, we’re told that we have to collaborate – but experience shows that most of us just aren’t good at it.  Despite all the compelling literature, the moving speeches, the enthusiastic FAC’s, the encouraging posters – despite all the real progress we simply lack the skills we need to work together effectively. For me, and for many others who need to collaborate with clinicians now, the principles and promises of co-produced care ring painfully hollow.

I want to change this, and I hope you’ll help.

Personally, I’m terrified of a future where every organization has a FAC yet Diuril doses can’t go below ten-per-kilo. I fear a future where the Patient Engagement movement enjoys tremendous success that is all bark at conferences and in hospital policies, but no bite where it really counts.

We need breakthroughs that remodel the clinical routines whereby professionals form their habits, giving them new skills to engage patients while also teaching patients how to help drive their care.

Join me – join us – in building something important

I joined the Society of Participatory Medicine (SPM) because I want to contribute to finding those breakthroughs. I need these breakthroughs, because I don’t care whether Michael’s odds look unfavorable – I intend to help him enjoy a long, full life.

Many non-profits talk about patient-clinician partnerships in one form or another, but the Society for Participatory Medicine is squarely focused on this as the kernel of healthcare improvement. SPM sees that healthcare will be frustrating, dangerous, and unsustainable – will fall short of its potential – until patients and professionals gain the skills needed to collaborate effectively.  That’s a tall order, but if we can fill it then everyone wins.

SPM is small but growing – it held its first annual conference in October, boasting outstanding speakers and enjoying rave reviews. The compelling principles and stories shared are only a start – on their own they won’t do much to help me give Michael his best chance at a full life. I intend to help SPM grow the capability to embed those principles deeply into practice, by organizing and supporting promising efforts to discover the breakthroughs that will disrupt the classic professional model and enable effective patient engagement. I’m confident that the solutions we need are out there.

They say culture change takes a generation. Well, it’s been nearly a generation since the Institute of Medicine’s report “Crossing the Quality Chasm,” and the most difficult work still lies ahead of us. We cannot afford to wait decades more, hoping for effective patient engagement to become a societal norm reflected in the typical patient-professional encounter. It’s not just patients and their loved ones who are suffering – today countless professionals currently shoulder the impossible burden of being expected to plan and execute safe, quality care on behalf of disengaged patients. Little wonder that we have a problem with clinician burnout.

And here’s where action comes in. Over the coming months, I will be working with a group of volunteers at SPM to build a program that attracts members and helps them contribute to the movement. It’s not just a membership drive – we’ll be building a real self-sustaining program. If you’re a member of SPM, I hope you’ll join the team. If you are not, I hope you’ll consider joining. It’s only $50 a year, and lifetime membership is only $300 – less than a single year costs for most societies.

If you are interested in being a part of this effort – even if for only for a couple of hours each month – please reach out to me at tysonortiz[at] We can change the future.

About the featured image at top: A team of Sandia Labs volunteers hoists a wall into place during the Habitat for Humanity Earth Day 2009 Build-A-Thon in Oakland, Calif. This is exactly like what SPM wants to do – work together to create a new structure for a better future. (Image license: Creative Commons Attribution-NonCommercial-NoDerivs 2.0 Generic (CC BY-NC-ND 2.0))



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