Putting Patient Engagement To Work, No. 6B

FasterCures is a DC-based nonprofit whose mission is to save lives by speeding up and improving the medical research system. Its CEO, Margaret Anderson, oversees strategic priorities, helps develop programs, and manages operations.

Let's do a thought experiment: 

Let's make a clone -- call her AMA, Another Margaret Anderson -- whose calling in life, like the real CEO's, is to run FasterCures. Now suppose AMA were to approach FasterCures in search of a job. How might that play out?

I'm fairly convinced, first off, that in spite of everything she has going for her, she wouldn't land the CEO post. The obvious reason being? It's already filled by the real Margaret Anderson. (and any fool knows there can only be one person at the top) No biggie; where there's a will there's a way: AMA could simply resolve to take another job in the organization and work her way up the ladder. A proven-winner-of-a-strategy except one of FasterCures' twenty-or-so positions would have to be open -- at that particular time -- and she'd have to meet all the requirements for it. (Not great at Excel? I see. Project manager cert's out of date? Uh-oh. Red flag.) She'd also have to come off as being more qualified than most of the 249 other applicants to have a hope in hell of landing an interview.

If that didn't pan out? Surely there'd be other avenues available? 

There's the ever-popular "submit your work as an outsider" approach, for example. AMA could write a relevant article; do a real bang-up job of it. In turn, FasterCures might or might not welcome it. It might not or might use it. If it did (use it), however, and she were to ask to be compensated for what the article would command in the business world -- she'd be laughed out of town. If she dared to ask for $50 for it, even $5, she'd have to fight tooth and nail. "We'll have to run it by the Board and try to get Its approval" is the stock reply. 

She might also inquire about working part-time or taking on other small projects as a freelancer. However...

Do you see where this is heading?

Good luck trying to work for a nonprofit you care about. Good luck trying to parlay your know-how or know-what, either for free or for pay, into any sort of ongoing thing. Good luck, in other words, trying to help advance the mission of a nonprofit from the outside. You know, where patients and patient partners live. 

The fact of the matter is either you're on the inside or you're SOL. 

What a shame: 

• For AMA: the fact that she couldn't do what she's uniquely suited and driven to do. (And here we're talking about the clone of a woman named by Digital Health Post as one of "12 Rock Star Women of Digital Health." Imagine if we weren't talking about a rock star; imagine we were talking about a regular person with even a slightly less-stellar resume or reputation. What chance would she have?) 

• For FasterCures: the fact that it couldn't take advantage of the mission-specific work AMA could do.  

• For each and every one of us: "One in three Americans lives with a deadly or debilitating disease for which there is no cure and few meaningful treatment options exist." And yet, in order to be able to help peck away at those, our most pressing life and death problems, you've either got to be independently wealthy or lucky enough to land yourself in one of a very small number of positions in a very small number of nonprofit organizations.

Is it any wonder(?) we get what we've got: Organizations that stay more or less the same and get the same quantity and quality of work done, year after year. The same entrenched interests participating in the same conferences and meetings, year after year. Progress as slow as molasses, year after year...

Who the #$%& made up these rules? Somehow with all the world's resources we ought to be able to do better. 

Our business-as-usual way of (not) getting things done stinks.

Putting Patient Engagement To Work, No. 6A

The business as usual conception that equates work with “employees doing jobs” seems so ingrained that the more general idea of engaging outsiders in meaningful ways – that's what patient partners are relative to an organization – is fairly foreign, I believe, to most organization leaders.

Nonprofit EDs, CEOs, and board members think in terms of having to manage inside staffs. Their jobs, in their minds? Mold their staffs to fit their organizations’ needs. Each and every staff member's job, in turn, is to be responsible for his or her role...which he or she does by carrying out projects and taking actions in line with whatever's the master plan. 

"Manage staff" is just one of a leader’s many jobs. My impression is that not many excel at it. Fewer still, as far as I can see, try hard to truly equip and empower their staffs. (which falls under the heading of delegating well) Now we’re expecting those same people to equip and empower patients? To engage with complete strangers, i.e., outsiders? Quite a big ask.

In my experience as a constituent of several nonprofits whose works touch in one way or another on neurological disorders and conditions, and whose effectiveness, in turn, may touch on the quality and longevity of my daughter's life, the leaders of those orgs are happy to have any monies I may be able to donate. They welcome volunteerism – “Get involved!” – in the traditional sense. Apart from that, however…

I can barely give my help away to them. I've been trying in earnest for the past two-and-a-half years (since the time I began this blog, much of which could be read as a record of how I've tried to be of service). Apparently they and their inside teams have everything under control.

In my mind, those nonprofits that presumably exist to help my little girl are fortresses. They cannot see me or other parents like me. Unfortunately – ridiculously – outrageously – criminally – I couldn't join in their reindeer games if my life depended on it.

Putting Patient Engagement To Work, No. 5

Patient engagement initiatives lead to patient acts, activities, and actions. Boiled down all the way, patient engagement is about getting things done. It's about work...and now that we've established that we can start in on the business of exploring and explaining why the title of this series is what it is.

Everyone I know who's an employee thinks of his work as his "job." It's the business as usual conception; we all can relate. It's what lets us distinguish between being "on the job" and "off the job," between being "at work" ugh and "at play" I'm free. It permits us to believe "It's not my job." Or, similarly, "It's the job of those smart people (those specialists) over there." It makes human resources of us.

To a theoretically pure and one-dimensional manager, resources are resources. The work an engaged patient or patient partner does for an organization is qualitatively no different than what an employee doing his job does. Or a machine doing its. 

Looked at that way, having patients (rather than employees) do the job should be a real boon to management, no?

Take for an example the job of observing and reporting on a kid's school performance and behavior while he or she is on a new medication. For the price of no wages, salaries, or tips*, the doctor, i.e., the manager in this case, gets much needed information. It's going to be high-quality info, too, because the teacher giving it is right there in the classroom, paying close attention. The insight gleaned should then lead to more effective (less wasteful, less guess-based) treatment. Economical and quality outcomes, in other words, should both be favorably impacted.

I believe the way we look at work and jobs going forward could have a lot to do with whether or not we're able to use patient engagement to the hilt, and, in turn, successfully tackle the gigantic challenges that life-threatening diseases and conditions represent.  

*which is not to say there wouldn't be costs involved

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. 3

The budding patient engagement "movement" is mainly about improving clinical and economical outcomes. It's about quality and efficiency, being more effective. D' you s'pose our leading management thinkers and practitioners might have a worthwhile thing or two to add along those lines?

I do. 

In the sub-sections below, I want to touch on one management process and another practice that I find germane to the subject. I'll describe some of the work being done around each, who's doing it, the tools and techniques they're using, etc.

Voice of the customer (VOC) (#notVolatileOrganicCompound)

The customer is king. And the "fact" -- debatable -- that he's always right (in reference to the famous Marshall Field quote) has been the case for as long as I can remember.

Recent studies are backing this up. From IBM's The Customer-activated Enterprise, for example, "Outperforming organizations are much more likely than underperforming ones to be collaborating with customers." Plus, "We found that companies that are receptive to customer input tend to have longer and more profitable relationships with their customers than companies that keep customers at arm's length."

Two companies that stand out in my mind for being ahead of the curve are Toyota (with its Toyota Way) and Procter & Gamble. Both have long "known it in their bones" that contexts matter. You simply can't do a great job of satisfying customers without partnering with them, and without absorbing and incorporating their very particular, i.e., local, knowledge. 

Now other companies, in their efforts to catch up, are looking to their own customers for feedback and insight. They're commissioning Chief Customer Officers*. And they're leaning for help on management consultancies that specialize in things like VOC.

VOC -- voice of the customer -- is a term used in business to describe the in-depth process of capturing a customer's preferences, expectations and aversions. I think of it as nearly synonymous (a near-o-nym? an almost-o-nym?) with patient engagement.

Vision Critical is one such consultancy. It specializes in building and supporting cloud-based customer intelligence platforms -- insight communities -- that provide companies with ways to deeply engage their customers. The goal in every case is to deliver meaningful insights that companies can use to make better decisions. Companies...

And other organization-types, as well. Nonprofits in the healthcare arena, for example, are using insight communities to understand and develop new patient journeys, explore and obtain feedback on new treatments, and more. Take Cleveland Clinic: it's been using one to listen to its patients. And reaping the rewards. Its "Patient Panel" has helped the Clinic improve internally in areas from marketing to operations to HR. Check out Do better for your customers: 5 business lessons from patient communities for more.

Delegation

Patient engagement = getting things done through other people = delegating

If you've been following along and clicking through my links, you know about PCORI’s, Boston Children's', and Cleveland Clinic's conceptions of the kinds of things that are delegable to patient partners. There are a lot o' things, aren't there? So many, in fact, that one might begin to wonder what's not potentially delegable. (Isn't every thing on every employee's to-do list at least a candidate? I mean, once someone commits to completing a task, he or she has three options: do it right away, do it later, or delegate it to someone else...) 

Alison Green and Jerry Hauser, authors of Managing to Change the World (2009), believe it's a nonprofit leader's duty to delegate. "If you can delegate it, you should delegate it, ” they write. Delegating should enable you to make the most of your limited** human resources and thereby maximize the effectiveness of your organization in pursuing its mission. 

Stop for a second. How many nonprofit leaders, for the sake of the mission, try to hand off every task they can? How many equate patient engagement with delegation?

When you delegate well, you put people in positions to do what they're dramatically well-suited to do. But it doesn't just happen. To the contrary, there are practices to be practiced, step-by-steps to follow. Green and Hauser offer easy-to-implement tools, for example, for determining what to delegate, assigning roles and responsibilities, and successfully guiding off-loaded work to completion. Bain and Company (one of Earth’s largest and oldest consultancies; Consultasaurus rex?) has compelling things to say about the decision making that goes into delegating. (“One key to successful delegation is to coach team members on making and executing critical decisions.” See How to be a Better Boss)

The bottom line here? 

Those who would engage patients should learn the ABCs of delegating from the ABCs -- thanks for the acronym to David K. Hurst, one of the “C”s -- of management: Academics, Business people, and Consultants.

*  *  *  *  *

Now, generalizing and summarizing:

There’s no need to completely reinvent the wheel if you’re an executive in the healthcare world who's considering a patient engagement initiative. You can look to what’s working in the business world…and apply liberally. I know in the cerebral palsy (CP) /neurological disorders arena we’re not drawing upon that knowledge nearly as much as we could. 

*Essentially, the CCO is expected to form deep personal relationships with the company’s customers to truly understand them. 

**I’ll call into question how limited those human resources really are later.

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.

*  *  *  *  *

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.

*  *  *  *  *

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.

*  *  *  *  *

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