{"id":20168,"date":"2017-11-27T15:02:58","date_gmt":"2017-11-27T20:02:58","guid":{"rendered":"https:\/\/participatorymedicine.org\/epatients\/?p=20168"},"modified":"2017-11-27T20:54:52","modified_gmt":"2017-11-28T01:54:52","slug":"patient-engagement-more-bark-than-bite-lets-get-to-work","status":"publish","type":"post","link":"https:\/\/participatorymedicine.org\/epatients\/2017\/11\/patient-engagement-more-bark-than-bite-lets-get-to-work.html","title":{"rendered":"Patient Engagement: More Bark than Bite? Let’s Get to Work!"},"content":{"rendered":"

Why the Movement Needs a Breakthrough, and How You Can Help<\/strong><\/em><\/h3>\n

\"Tyson<\/a>Guest post by SPM member Tyson Ortiz (right), a highly committed member of SPM who works in\u00a0organizational culture change. His previous post,\u00a0How I became an e-patient: through practice, with coaching (using Lean on the patient side)<\/a>, gives more of his family’s background and his motivation to grow this movement. Tyson will lead SPM’s upcoming membership program.<\/em><\/p>\n

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<\/em>, and I intend to help.\u00a0 Despite all the encouraging signs of this movement\u2019s progress, I assert that in the area of healthcare where patient engagement is most vital \u2013 the real-time relationship between a patient and their clinicians,\u00a0now<\/em> \u2013 progress has been spotty.\u00a0 I\u2019m writing to illustrate the problem and ask you to join us in pushing this movement to and through its tipping point.<\/p>\n

The state of our movement<\/h2>\n

<\/p>\n

The many efforts over the past decades to promote some form of patient engagement have made great progress. \u00a0I 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.\u00a0 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\u2019ve found every center proudly and publicly embracing the ideals of patient engagement in one form or another.<\/p>\n

Yet something is wrong. \u00a0Personally, I\u2019ve experienced more stress from the friction of trying to be engaged in my son\u2019s day-to-day care than from his actual medical condition<\/strong> and the long line of life-threatening complications that it has produced.\u00a0 As successful as the movement has been, at the front lines of care <\/em>I\u2019ve found that the classic professional model \u2013 which doesn\u2019t at all value an engaged patient or family member \u2013 is alive and well.<\/p>\n

In a moment I’ll share a recent example.<\/p>\n

It seems that the patient engagement movement\u2019s 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\u2026 though perhaps necessary, these have proven insufficient to overthrow the classic professional model.<\/p>\n

Even the progress made to enable patient engagement within<\/em> the clinical encounter \u2013 such as family-centered rounding \u2013 has had limited impact toward creating effective <\/em>patient engagement.\u00a0 I\u2019ll tell a story to illustrate this point \u2013 just one of many such stories from Michael\u2019s journey\u00a0\u2013 then I\u2019ll close by suggesting something concrete that we can do to move forward.<\/p>\n

\u201cPatient Engagement\u201d is easier said than done<\/h2>\n

\u201cWell,\u201d the Fellow said slowly, \u201cthe guideline for Diuril is ten milligrams per kilo, and I\u2019ve never used less\u2026 so I wouldn\u2019t be comfortable going down to four-per-kilo.\u201d<\/p>\n

I\u2019ve 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.<\/p>\n

Several days before this discussion with the Fellow, I had realized that the dose of Diuril being used to keep Michael\u2019s kidneys working was more than twice the dose we\u2019d been using at home.\u00a0 This observation drove me to ask around a bit, and someone on the medical team told me that Diuril is a \u201cthreshold med\u201d in that it was only necessary to use enough to get the desired effect, and that giving more didn\u2019t help.\u00a0 From monitoring the results of labs taken in clinic over the previous several months, I knew that excess Diuril was hard on the kidneys \u2013 so I suddenly felt that we might be giving excess Diuril and contributing<\/em> to Michael\u2019s kidney crisis.<\/p>\n

I presented this argument to my son\u2019s primary cardiologist, who agreed that we could try lowering the dose to the four-per-kilo we\u2019d used at home.<\/p>\n

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.<\/p>\n

See my point? \u00a0Despite the best intentions of all involved \u2013 despite literally being told that I was \u201cthe most important member of the care team\u201d \u2013 \u00a0the engaged patient\/family perspective held little value in these clinical encounters.<\/strong><\/p>\n

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 \u2013 nothing I said seemed to matter.\u00a0 My questions and suggestions were consistently met with blank stares \u2013 which I\u2019ve come to recognize as a sure sign of weak skills for co-producing care \u2013 and as my input didn\u2019t fit with the attending physician\u2019s paradigm it was simply answered away.<\/p>\n

I decided to act<\/h2>\n

For days I accepted the situation.\u00a0 I told myself that these professionals knew what they were doing, and I didn\u2019t. Although the primary cardiologist had agreed with my idea, they hadn\u2019t 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\u2019s 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<\/em> truly had the right answer.<\/p>\n

So by the time the Fellow gave me her explanation about the textbook dose \u2013 which, to her credit, was the clearest explanation anyone had offered in denying my request \u2013 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.<\/p>\n

It turned out that the smaller dose was still enough to be effective, and<\/em> the next day Michael\u2019s kidney labs finally turned around and started improving!<\/p>\n

I don\u2019t 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.<\/p>\n

This medical center\u2019s website boasts its Family Partnerships, inviting families to get engaged in their child\u2019s care at the level they choose.\u00a0 This center is proud, justifiably, of its accomplishment in achieving family-centered rounds. Patient\/Family Advisory Councils abound here.\u00a0 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\u2019ve been to enough centers to say that this center is truly superior<\/em> \u2013 in its technical capability, in the high caliber of its people, and<\/em> in its effort to engage patient families.<\/p>\n

And yet it takes me almost a week to make an obvious change to a med when my son\u2019s life hangs in the balance. Why? From my professional work\u00a0in\u00a0process improvement and culture change, I think\u00a0I know the\u00a0answer:\u00a0It\u2019s a mutual inability to collaborate \u2013 we both lacked the necessary skills\/tools.<\/p>\n

It’s time to change that.<\/p>\n

Now is the time to take action<\/h2>\n

As patients and professionals, we\u2019re told that we have to collaborate \u2013 but experience shows that most of us just aren\u2019t good at it.\u00a0 Despite all the compelling literature, the moving speeches, the enthusiastic FAC\u2019s, the encouraging posters \u2013 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<\/em>, the principles and promises of co-produced care ring painfully hollow.<\/p>\n

I want to change this, and I hope you\u2019ll help.<\/p>\n

Personally, I\u2019m terrified of a future where every organization has a FAC yet Diuril doses can\u2019t 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.<\/p>\n

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.<\/p>\n

Join me \u2013 join us \u2013 in building something important<\/h2>\n

I joined the Society of Participatory Medicine (SPM) because I want to contribute to finding those breakthroughs. I\u00a0need <\/em>these breakthroughs, because I don\u2019t care whether Michael\u2019s odds look unfavorable \u2013 I intend to help him enjoy a long, full life.<\/p>\n

Many non-profits talk about patient-clinician partnerships in one form or another, but\u00a0the Society for Participatory Medicine is squarely focused on this\u00a0as the kernel of healthcare improvement<\/em>.<\/em>\u00a0SPM sees that healthcare will be frustrating, dangerous, and unsustainable \u2013 will fall short of its potential \u2013 until patients and professionals\u00a0gain the skills needed<\/em>\u00a0to collaborate effectively.\u00a0 That\u2019s a tall order, but if we can fill it then everyone wins.<\/p>\n

SPM is small but growing \u2013 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 \u2013 on their own they won\u2019t 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\u2019m confident that the solutions we need are out there.<\/p>\n

They say culture change takes a generation. Well, it\u2019s been nearly a generation<\/a>\u00a0since 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\u00a0effective\u00a0<\/em>patient engagement to become a societal norm reflected in the typical patient-professional encounter. It\u2019s not just patients and their loved ones who are suffering \u2013 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.<\/p>\n

And here\u2019s where action comes in.\u00a0Over 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\u2019s not just a membership drive \u2013 we\u2019ll be building a real self-sustaining program. If you\u2019re a member of SPM, I hope you\u2019ll join the team. If you are not, I hope you\u2019ll consider\u00a0joining<\/a>. It\u2019s only $50 a year, and lifetime membership is only $300 \u2013 less than a single year costs for most societies.<\/p>\n

If you are interested in being a part of this effort \u2013 even if for only for a couple of hours each month \u2013 please reach out to me at tysonortiz[at]gmail.com. We can change the future.<\/p>\n

\n

About the featured image at top:\u00a0A 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))<\/em><\/p>\n

 <\/p>\n

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