Putting Patient Engagement To Work, No. 4

I've had a few-decades-long fascination with management frameworks, comprehensive approaches, and attempts to codify what does or doesn't work in-and-for organizations. It keeps me continually wanting to keep up with what the ABCs (see previous post) have cookin'.

About a year ago, The Bridgespan Group, a leading consultancy serving nonprofits exclusively, came out with a report entitled From Input to Ownership: How Nonprofits Can Engage with the People They Serve to Carry Out Their Missions. I've since read and referred to it many times. What really interests me are the authors' attempts to (1.) categorize the different ways nonprofits are engaging their constituents, and (2.) locate those on a straight-line continuum based on the "depth of intensity" they represent.

Per their framework, less intensive forms of engagement are put on the far left. Those have to do with efforts to elicit and gather timely data, i.e., input, from constituents. Input such as? Basic demographic info. Answers to poll questions. Survey responses. The juicier stuff that focus groups and /or ethnographic research can often unearth. 

Remember the docs and clinicians at Boston Children's Hospital, the ones I intro'd in post No. 2? They want input. Third-party observations about their patients' health-states are highly valuable, so they're engaging teachers, family members, etc. to obtain them.

By comparison, staffers at PCORI envision additional roles for patients to play. All research projects, for example, go through planning phases. Why couldn't and shouldn't patient partners help to: identify the topics? develop the research questions? create the interventions? identify comparators? define the characteristics of the studies' participants? You end up with better plans when they chip in, believeth PCORI. Garbage in...garbage out.

Relating this back to the report -- 

PCORI is promoting and pushing for more intensive forms of engagement, what Bridgespan calls co-creation. "Some organizations have chosen to take constituent engagement further into what we call co-creation -- developing solutions with constituents." These the authors peg as middle-of-the-continuum activities.

Interesting, hunh? Both Boston Children's' and PCORI's conceptions of patient engagement seem more or less to fit Bridgespan's schema. No doubt you can see why I applaud the efforts. 

Is it entirely helpful, though? Is it logically consistent? 

Well...

I believe every patient-partner contribution counts. It all matters. I don't believe you're doing less, or lesser, work the farther right on some dreamed-up scale you go. Offering input in the form of answering "yes" or "no" to a poll question, for example, isn't inherently shallower than co-creating. If it helps further an organization's mission, it's valuable. No matter how much sweat, synapsing, or soul searching is required. 

So I guess I don't know what "intensity of engagement" really means. Can you reliably measure it? I don't believe so.

Drawing lines between constituent (patient) contributions that are valued as input vs. contributions used for developing solutions can get dicey, too. But I do believe categorizing different engagement activities by type could prove to be helpful. Maybe we can say what Bridgespan gives us in this regard is a start. I hope to return to it in future posts.

For now --

All the various things engaged patient partners do lead to checklists getting marked off, to dents being made in workloads, to getting things done. For a trained manager, different forms of engagement equal different forms of execution. For the untrained rest of us, it's just plain ol' work. And it's on to looking at patient engagement as work where I'll head next.

Putting Patient Engagement To Work, No. 2

It's time to mix in a definition. Here's one to grow on from Wikipedia:

Patient-centered care supports active involvement of patients and their families in the design of new care models and in decision-making about individual options for treatment.

As the parent of a sometimes patient -- a crude way of saying my daughter's patientness is an aspect of her Julieness -- my brushes with patient engagement have only been indirect: I've read or heard about it, mostly in conjunction with research studies; mostly intrigued by the idea that having patients participate can lead to better results -- which makes me typical. Indeed, per The Challenges of Conceptualizing Patient Engagement in Health Care: A Lexicographic Literature Review, published this past June, "the ongoing academic debate seems to focus principally on patient engagement's impact on clinical (and economical)* outcomes." 

I say those things to support my contention that "medical-scientific" is the prevailing perspective out there. Next I want to introduce two real-world approaches I believe represent it well.

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Clinics and private practices associated with Boston Children's Hospital are using a new online platform to help paint clearer pictures of how patients are faring between doctor visits. They're relying on parents, teachers and other caregivers to become "cultural anthropologists," in a sense, by having them observe and then upload reports about kids' symptoms, school performance, quality of life, and more. The benefits? Among others, docs now have more accurate information with which to work, office visits are more productive and on-point, and treatment decisions appear to be improving. 

For details, you'd do well to turn to Boston Children's Hospital Monitors Young Patients with Data from Caregivers, Parents, Teachers and Coaches (Sept. 12, 2014) from Sherri Dorfman's blog, Consumer eHealth Engagement.

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Patient Centered Outcomes Research Institute (PCORI) -- how's that for a medical-scientific mouthful? -- is a nonprofit organization that funds comparative clinical effectiveness research (CER) studies to determine which healthcare options work best in particular circumstances. Especially relevant to the focus here, PCORI claims to incorporate patients in its studies "more consistently and intensively than others have before."

What does that mean?

With regard to the research it funds, PCORI seeks to involve "patient partners" (definition: patients, family members, caregivers, and the organizations that represent them that are representative of the population of interest in a particular study) in all aspects of its projects: from planning, to conducting, to disseminating results. Whereas Boston Children's values patient partners for their willingness and abilities to make observations, PCORI values its partners for more and other things.

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I hope to comment more about both approaches in later posts. Two pre-comments comments: 

• I think one could safely say that PCORI's approach to patient engagement is more expansive than Boston Children's; 

• It's worth noting that PCORI's Engagement Staff** is a veritable DQ Blizzard, with social science and humanities grads of every flavor mixed in.

To that last point, I gather there are some business school grads on staff -- but not many. I'm curious as to why. How come? 'Cause I believe management, the field, can bring a lot to the discussion. 

It's where I plan to head next.

*I added the parens. More about the economics of patient engagement to follow.

**Get a load of these titles: Chief Engagement and Dissemination Officer; Chief of Staff, Engagement; Director, Patient Engagement; Deputy Director, Patient Engagement; Engagement Officer (2); Program Associate, Engagement (5); Project Assistant, Engagement

Thanks For Asking

Guest post prepared for Cynthia at Reaching for the Stars

Why, you ask, aren't there more doggone clinicians out there who specialize in comprehensive CP care?

Great question! 

First off -- I think I may have a good sense of why you'd want to know. I'm a dad of a beautiful (had to get that in there) daughter with CP. Of course, I want the best for her. I'm also eleven-plus years into it now, and I've learned, through trying and erring, just why they're called "complex" special needs. Hardly anything about 'em is as simple as one would hope.

Let's take a quick early detour:  

Cristin Lind is the special needs mom behind the enlightening blog, Durga's Toolbox. Last September she posted this care map (below) that she had drawn to communicate the "spider web" of connections she navigates in the course of raising her son. If you haven't already seen the map or done a similar accounting, I bet you'd be surprised at the number of connections, especially in the health arena, you're juggling yourself. 

More about how you may be able to use your own care map to get things moving in a simpler & saner direction at bottom.

Wouldn't it be a lot easier to have just one go-to doctor? To be able to turn to a single medical pro who understood both your child's history and challenges -- and all things CP? Someone capable of integrating everything that needs to be integrated and responding with appropriate care? 

Dr. Lisa Thornton ten-fours the idea. In writing for RFTS's 30 Days of Inspiration, Motivation & Information Series, she says "it’s critical for parents to find a health care practitioner who is familiar with the management of Cerebral Palsy and who can help them sort through the best options for their child." She also notes that pediatric physiatrists are "specially trained for this" but that they, unfortunately, are rare.

Bummer. 

Jibes with my own experience of: 

• searching last summer for an authoritative answer to the question Should my child be under the care of a physiatrist? 

• trying to track down a real, live one to talk to, and 

• all but striking out. 

When I eventually did encounter one of these elusive birds, I was somewhat disappointed. The doc I met didn't seem to want what I wanted: (which was) for him to take overall charge of my daughter's care. He wasn't a coordinator. Instead, he saw himself as the "spasticity guy" and he was quite happy to defer to the neurologists, developmental pediatricians, etc. with whom he practiced. Despite having been intensively and holistically trained in those fields himself.

Your results may vary. 

For me, the jury's still out as to whether or not there should be a push for more of these specialists. In the meantime, I'm back to the drawing board wondering: 

Maybe my daughter would do just as well without a physiatrist? Maybe the team care she's already privileged to receive (the kind offered via hospital comprehesive CP programs, independent therapy centers, intermediate care facilities, etc.) is workable? Maybe the focus should be on improving the ways clinical teams operate? 

Truth be told, those aren't the only "Maybe"s that come to mind. I can go in any number of directions on this. Maybe, for example:

• we should ask practicing physiatrists to tell us more: Do you feel comfortable in the role of key care coordinator? Would more kids with CP be better off if there were more of you scattered about? 

• a parent survey is in order to learn how needs are or aren't being met via current care arrangements? 

• the focus should be on parent education? Maybe there's a way -- thinking way, way outside the box -- parents could become junior physiatrists themselves?

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“Some problems are so complex that you have to be highly intelligent and well informed just to be undecided about them.”*

Why aren't there more CP specialists out there? 

Still a great question. 

Like CP itself, though, it's complex and "wicked." It's not strictly technical. There's no one, straightforward answer. Aside from posing it and adding my two cents, I'm not sure what more to do with it.

Now that the question's been formulated and made public, however, maybe some better equipped individual or organization will pick up on and wrestle with it. Maybe one or more of my follow-up questions will trigger the same. That's my hope.

My main message is this:

I'm as naive as they come. But I'm pretty sure that no upper limit to the number of CP specialists has been set in stone for all time. The situation is fluid. That physiatrists are rare isn't the respsonsibility of United Cerebral Palsy (UCP). There's no AAPMR (physiatry's medical society) conspiracy. This has nothing to do with Reaching for the Stars (RFTS). The reason there aren't more specialists is that we parents haven't been piping up. 

It really comes down to me and you.

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All I really know is I want my daughter to thrive. I believe asking questions can help.

For good solutions to emerge, you have to ask questions to which others can (and wish to) respond. That's how things get moved along. That's how you chip away at complex problems like ours. You ask questions -- no matter how naive an "asker" you are -- and you hope to learn your way to better and better answers.

It seems to me a questing disposition is key.

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The care map concept has taken on a bigger life since Cristin first unveiled hers. More and more it's being recognized as a valuable tool both for parents and their "provider teams."

Benefits for parents include: gaining a better understanding of the care landscape to be navigated, and growing new skills /capacities. (It's empowering.) For providers, e.g. health professionals, care maps help them to "meet families where they are" and may, in turn, lead to better care-coordination solutions and health outcomes.

There's a widespread belief that a gulf exists between the amount of health care needed in the world and what's actually being given. So, health care is being redesigned everywhere with care coordination a top priority. Boston Children's Hospital has taken a particular interest in moving in this (family-centered) direction and partnered with Cristin. As a result, two specific things you, as Juggler-in-Chief, can do now that you couldn't just a few months ago are: 

• visit the hospital's care mapping page

• download a care mapping how-to guide to learn how to create and use one yourself!

*Laurence J. Peter, author of The Peter Principle