Clayton Christensen gave a talk at last week’s SMARTHealthIT board meeting on, as he put it, how people think. I was absorbed by his storytelling, so only wrote down a few concepts:
- We make assumptions based on false correlations (and we should guard against that tendency).
- Data and maps are verbs, not nouns, and they never tell the complete truth. Something is always omitted in a data set or on a map.
- Watch out for false boundaries. For example, why is there a boundary between undergraduate education and the working world? What if there were no boundary? How would universities change?
- If you bow down to the frames of existing aggregates (such as an org chart or a database), you may miss the signal that a single person or piece of data is screaming out to you. We miss so much insight this way.
During Q&A, I observed that a false boundary in health care is that which supposedly defines “home” vs. “clinical” care, when in fact it is all part of one system. I was also thinking to myself that patients and caregivers are screaming out to be heard but aren’t on the official health care org chart — or are way at the bottom.
Clay said, “Dang! I never thought of it that way.” It was a lovely response and right in line with his open and affirming nature, but I wasn’t fooled. I know that he himself has blended home and clinical care to a remarkable degree. If he hadn’t thought of it quite that way, he has come pretty darn close. A quote from an article about his personal health issues:
“If my INR is above three the result is Christine makes kale soup, which makes your blood clot much faster. If it’s low then we don’t have those kind of green vegetables. On-the-spot care works if you do the test yourself, because that information causes you to do something different.”
It was really fun and mind-expanding to see through his eyes, which is what great thinkers can do: take you on a helicopter ride and point out new patterns in a familiar landscape.
I see two more examples of health care boundaries that are worth discussion:
- The false boundary between lay expertise and professional expertise. Patients and caregivers have knowledge that is worthy of being enshrined and shared. What would a learning health system look like if it honored all participants’ intelligence?
- The false boundary between patients and researchers. Why shouldn’t research questions be generated by people with the disease being studied? Why shouldn’t research teams make sure there’s a seat at the table — more than one! — for people most affected by their work? And, of course, why shouldn’t patients and caregivers engage in N=1 research (which most probably do, without using that fancy name for it)?
What do you think? Are these boundaries worth keeping? If not, what opportunities do you see to change things?
For example, I’m interested in how we might use lightweight means — like texting — to break down barriers between home and clinic. And I am honored to be an advisor to initiatives like Flip the Clinic and SMARTHealthIT in order to help figure out how to improve the existing system. What do you see in the landscape? I’d welcome your thoughts and suggestions in the comments.
Image: Light bulbs in a night sky, by Ted Eytan on Flickr.
Gilles Frydman says
you won;t be surprised when I say that the best, most efficient and cheapest way to break the barrier between home and clinic is to put the patient in charge, whenever possible. I think, in reality, it is the only way it can be achieved. As long as that has not become integrated into the DNA of the Health Care System it will remain just that, unlike some national health systems like the French system which calls itself Systeme de Sante. This just sent me to Wikipedia which has this interesting content:
“Often health system has been defined with a reductionist perspective, for example reducing it to health care system. In many publications, for example, both expressions are used interchangeably.”
I think that we are all grappling with the reductionist vision, which may have been reinforced with the intense focus on data and EHRs in the last few years.
Susannah Fox says
Indeed, I am not surprised and I applaud this insight.
What I am greedy for is examples or ideas about how exactly to do this — and how to help those who have not yet seen the light to engage (on all sides).
Emily Kramer-Golinkoff says
I think one of the big issues chronically ill patients have with the health care system is that many of the boundaries feel very artificial. For example, home vs. clinic and inpatient vs. outpatient “boundaries” feel like provider or health system-imposed distinctions. For me, it’s all a part of my life with CF, but that continuity isn’t mirrored in the way care is delivered in our current system.
So, I agree with Gilles, that if the health care system really encouraged active patient and family participation and listened, it would totally change the way health care was understood and delivered.
Here’s an example:
When I go into the hospital with an exacerbation, the hospital often can’t get/won’t authorize some of my medications (i.e. hypertonic saline in the concentration that I use at home). They also won’t let me bring my own. I inhale hypertonic saline 3x/day every single day. I swear by it. It’s considered a best practice in CF care, and the fact that their rules disrupt my medication routine — prescribed and highly recommended by my outpatient doctor — is an example of hospital-imposed boundary (inpatient vs. outpatient) being totally nonsensical and even detrimental to my health.
Emily Kramer-Golinkoff says
I should add that my outpatient doctor is the head of the CF program in the same health system as the hospital where I get admitted!
e-Patient Dave says
Emily, I’m familiar with stupid situations like the one you describe, and in this context it makes me realize:
One demonstrably false boundary – a mental boundary – is the idea that things inside the hospital are necessarily and enforceably better than anything from outside the hospital.
Also, that policy seems to be aggressively the *opposite* of patient-centered: it’s forcefully *not* what the patient already knows works. The worst kind of medical arrogance: “We know, and you can’t possibly have anything to add, and even if you do, we’re more concerned about our own liability than we are about what already works. Our expert status trumps what already works.”
THAT is a false boundary.
Philippe Ameline says
Entering an hospital is always crossing a very material boundary.
The false boundaries in this case are of two different kinds:
1) this is the place where excellence occurs in health,
2) hence, the team inside this box can impose local decisions.
To be “patient centered” should imply, IMHO, to use the person’s reference frame as the reference frame where “equations are solved”. That’s to say, for those who remember maths and physics, to work in polar coordinates (with the moving person as the reference point) instead of trying to solve things from the many Cartesian reference frames attached to the many care places.
In doing so, you can materialize a team around the patient, manage access rights according to their position “around”, and have them contribute to a “Personal Health Project”
I have been building open source components according to this vision for years, see http://www.slideshare.net/pameline/life-line-35253631
I completely agree with Emily and Dave, and have in fact faced the exact same challenges. The boundaries that don’t need to be there can actually be detrimental to health. Finally though, the logic behind some of these “boundaries” is being challenged and I don’t think hospitals or clinicians know what to do with it, how to change, because they aren’t prepared to deal with prepared patients. It will require a major shift in the way people think about the value of care and collaboration.
I attended a meeting just yesterday about Learning Networks and how some participating disease networks have these learning structures for QI and transparency, have centers that aren’t enrolling patients in their registries, or aren’t enrolling their centers in the network, because of the perception that it would increase the burden of care for the center. While doing this work up front may take a little more effort, it will ultimately improve health and lower the burden of care, I believe. But that’s not my point. Similar to the way CF patients are often approached for research opportunities, many centers are finding out and deciding who to offer the opportunity of participation to vs allowing patients to talk to one another about it, peer to peer awareness and recruitment. The awareness of these opportunities – for research, for network participation, and I’m sure for a variety of other things – it is still in the hands of clinicians and centers because of a false boundary that patients or networks of patients don’t always know what’s best, especially within the walls of “the system”, or simply that centers don’t want to burden their patients with more to do/think about. Desperate for the opportunity to participate and with the fear of being kicked out of the study, patients comply, or talk anonymously to one another about this. But it’s starting to change as patients take their ideas and the opportunities that they find into their centers and are creating a demand for these changes to take place. We’re calling out these false boundaries, challenging the status quo, and making people realize the value in taking down these walls. I think that it would be incredibly valuable to be able to show different disease groups or medical institutions the power of these empowered patients. Integrating patients onto care teams widens the opportunity for identification of such barriers, and provides the chance to work collaboratively on solutions and tools to overcome them. With the unnecessary barriers gone, I’m willing to bet that engagement is easier and thus improved (more productive and meaningful). And then with transparency comes a broader awareness, allowing for more easily recognized relevance (by all stakeholders, not just patients), improving the quantity, quality and speed of participation. This is all possible if we can work together to identify the boundaries that are don’t need to be there in the first place.
Sherry Reynolds *Cascadia says
I often feel like Horton hears a “Who” . Many many of us have been saying that is is the shift in the role that will bring about change.It isn’t about access to data or new payment models but changing the “role” of the identified “patient” from being a recipient of care to being part of their own (or their families) care team..
We actually already know how to do this and have been doing in for years. I first learned this concept from my Mom and women’s health and again at the height of the AIDS crisis a year out of college. Very few people wanted to work in the community so we created a new “care” system that included everything from housing and legal assistance to policy and new ways to provide health care.
Almost a decade later while working at Group Health Cooperative (60 years old btw and as a co-op literally owned by the patients who employ the docs) I learned how a more traditional health care system was able to again design everything from our EHR (the first to start with a patient portal in 2004) to removing waiting rooms from our new clinics.
When I worked in DC at HHS it was clear however that people were so focused on the nouns (data, technology, policy, blue buttons and marketing campaigns ) that I was a pretty much on my own in trying to teach everyone in our community that once you realize that the person who have called the patient is in fact the primary care giver then you can start to see organizational and culture change. 😉
Susannah Fox says
GroupHealth is one of those examples of an outpost — an island in the not-yet-boiled ocean (see my reply to Matt below) — that shows that a person-centered model can work. Thanks, Sherry!
Sherry! It’s so refreshing and inspiring to hear about your experience where patients are part of or leader of their own health care team. This is the model I saw and used growing up in India. And what you saying is what we need in health care.
I’m a computer scientist who loves talking data and I’m a nurse who loves health care. But I think ‘we’ (as in health care system ) need to forget about technology, insurance, expertise, etc and start from scratch – start from patients. Let the patient pick their team and let the patient teach us and teach the health care system. I am starting a very humble in the direction – I’m working on developing free health education videos and free EHR.
I would love to learn more about your model and how it was developed and sustained. Let me know if you would like to continue conversation – my email is firstname.lastname@example.org
Thank you fig everything you do!
Susannah! Thank you for this insightful article. You somehow manage to always inspire me! Look at me reading and writing to you instead of doing my morning meditation 🙂
I strongly resonate with the core concept that patient is not just part of, but leader of his health care team. We need to develop a system that honors our patients, their insights and intelligence and adjust the health care around them. I’ve been thinking about my role in this transformation and I’m hoping that I can make peoples lives and search for health care easier.
Patient integration vs. patient engagement. I work on our care team as a Family Partner, and we’re all still trying to figure out what that means and how it works. We’re finding the false boundaries in healthcare everyday through this position, one that aims to integrate the patient/family perspective into all health decisions at every level. I’ve been kept out of conferences, told that it’s not my place to make suggestions like I do, omitted from meetings, cornered and told by a scientist that he’s “not sure what I’m doing but that this isn’t a disease that can be cured in a garage” and have had my perspective diminished more times than I can count. However, it seems to always come back to the realization that the perspective that I bring to things like trial design or inter-visit communication are unique, and that the resistance is mostly born from unfamiliarity. I’m making people uncomfortable when they think I’m crossing a boundary until they realize that the boundary that exists is one they’ve created through assumptions. I’ve been forced to show folks how, when I cross the imaginary boundaries that they’ve set, that when we work together, we are getting farther faster and it’s costing less money.
It hasn’t (and won’t!) be an easy task to do this, but I think that transparency can go a long way in encouraging patients to stand up and act out (in a good way of course). Clinicians and scientists are often times so guarded with their knowledge that they’re spending all of this time and money creating things for patients and then when patients don’t use them they’re considered non-compliant. This also has patients thinking that doctors don’t care about them. I can see, from the role that I’m in, that so many of them do, and that they’re working to help them, but imagine if we were able to remove that false boundary and have patients and clinicians work together, creating stuff WITH patients instead of FOR patients, making stuff that actually work for both!
I could go on for days about the importance and value of this type of collaboration, but in order to make it work we need to find a way to take down the wall between us, and I think that patient integration is just the thing to force those walls down.
Tom Krohn says
Well said, Erin. I’ve been on a journey to open up our drug development processes and integrating patients is at the heart of what is needed. Tom
Tom Krohn says
Susannah, it was great to see you again in Boston at the meeting. I love listening to Clayton as he is not only insightful but just as much encouraging. I too have been reflecting on the boundary topic he raised. One boundary in healthcare that also is artificial is the separation of research (clinical trials) and treatment. While each have their own aspects, for many diseases, clinical trials are the only and possibly best treatment options available. It is when we look through the patients eyes and experience that we see a new set of options and expose the fallacies of our artificial boundaries.
Tom thank you for bringing that up! I was at a meeting about adherence and I was arguing that what we actually need is meaningful engagement, as adherence is a downstream effect of that, and someone who disagreed with me said, “It can cost over $1bil and take up to 10 years to create new drug and then patients aren’t compliant! This is about adherence!”. This is the prime example of something being done for patients rather than with patients. To steal a line from Dave deBronkert, “It’s perverse to keep a patient in the dark and then call them ignorant!” Had the patients been invited into the research and design of the clinical trial, perhaps the bringing that drug to market would both take less time and cost less money! Rather than finding patients who are willing to participate in research, let patients talk to other patients about the research and you’ll find people who want to participate, increasing both the quantity and quality of participants. If we want to move science forward, we need to take down these boundaries!
Sherry Reynolds @cascadia says
That is the “theory” behind the patient centered outcomes research investment in the new patient research network. (FYI PCORI was funded under the ACA)
Gilles Frydman says
couldn’t have said it better! Informed patients, at least those with cancer, learn fast that, in many cases, clinical trials are just another treatment, often delivered at some of the best cancer centers, by some of the best oncologists/researchers. These patients have long forgotten about the fallacy of the boundary and I think many of them live longer because of it. Not surprisingly, these patients never consider that participating in a clinical trial makes them guinea pigs.
This is one of the best examples I know of the clear value of patient empowerment, done mostly by patients. They help each other, take down the silos that the health care professionals have build so strongly over many decades and in the process, fix one of the most intractable problems faced by the system and industry: clinical trial recruitment.
Of course, this only works for trials that have clear and well defined potential value for the patients, a value that can be explained to the patients so that they can make a truly informed decision.
e-Patient Dave says
This is way too long, longer than some posts.
First, I wonder if when Clay said he hadn’t thought of it that way, he actually meant it. (I hope he’ll be reading this thread, so I’ll say hi, Clay! You probably don’t remember when we crossed paths at a Beth Israel breakfast in 2009, I think it was.)
I wonder if he views the home / kitchen intervention as part of the continuum, or as something he and Christine do that is definitely not part of healthcare because it’s not done by the professionals.
This is especially of interest to me because of my interest in pure, textbook disruption as he wrote about it 20 years ago. My industry (typesetting) was disrupted by desktop publishing, and only in hindsight is it clear that what happened was the location of assets, and the ability to create value, shifted from inside the industry to outside. Fonts got unleashed, and page layout and typography began to be done outside the former walls. “The unwashed” out there didn’t do it at all well at first, though that changed.
I agree with Gilles and Sherry, of course. Like you I hunger for proof cases with some detail, some specifics. That’s why I’m soooo interested in anecdotes like:
– Sensors (and sharp eyes) that monitor things and spot problems at home. Examples: continuous glucose monitors (or simple home test strips) for diabetes; the AliveCor for EKGs; even a home thermometer – all these used to require a trip to the doctor. This means situational awareness can now occur outside the clinic, and situational awareness enables meaningful response. In the past that response was only possible after a visit to the clinic. That’s one of the types of value that made clinical “clinical” and distinct from “home”.
Is that a false boundary, or a dissolving boundary?
– Access to facts. “Doc Tom” Ferguson documented a decade ago that it’s no longer possible for anyone to know everything, not even doctors, and now we know that smart patients (to use the name of Gilles’ company) may well know things that many docs haven’t seen.
So it seems clear that clinical vs home is no longer a useful distinction when it comes to where facts are available. If anything, it’s flipped, because we both know of cases where an e-patient had info that the clinic didn’t – partly because of Doc Tom’s “lethal lag time” in publication and partly because e-patients commonly go beyond the literature, like the unpublished side effect advice I got, which my oncologist thinks helped save my life.
– Diagnosis. We’re starting to see leakage across the membrane on this asset too. Decades ago my wife and I learned at home that daughter Lindsey was on the way (an early home pregnancy test), and now Scanadu promises to do some simple diagnoses with a hand-held gadget. Of course for a kidney cancer diagnosis I wouldn’t rely on a pee stick or Scanadu. But that boundary too – “Where do you get diagnoses?” – is eroding.
And of course health data – images and visit notes and lab data – are being unleashed. Some think the unleashing erodes’ docs’ authority, but I hope it’s clear that the unleashing is just part of a much bigger trend.
AND, now that some assets can exist outside the medical office, factors like convenience are coming into play, so just as Clay says, new business models are evolving. Hospitals that are hard to do business with will find themselves wondering why fewer people are supplicants at their door.
Now, all those are about a shift in where valuable assets exist – they’re not about the behavioral or cultural issues others cited. An asset shift doesn’t matter if behaviors don’t change. But the migrating assets do point out that the boundaries are not what they used to be.
Plus, in my speeches as a change agent I find it’s useful to point out to people that some truly relevant things have changed … so the very nature of why we go to a clinic is changing.
Finally, I suspect Christine’s kale soup matters in a different way: all the tech that I mentioned has to do with responding to symptoms to improve one’s “score,” and the kale soup does the same at a different level. In your context I’d say the boundary is no longer clear on where and how one’s score can be boosted.
So perhaps it comes down to this:
If you view healthcare as getting assistance from professionals when you’ve run out of your capacity, then by definition the boundary is the edge of your capacity and there will always be one.
But if you view the game as health itself, then your abilities outside the clinic are ever-expanding, and the useful thing to look at (I think) is what happens where.
I sure hope this hasn’t put people to sleep. I have to say, after 5 years of looking at it (far fewer than Sherry et al), for me it’s important and enlightening to get specific about what’s valuable and how it’s demonstrably shifting so that new things are possible.
Susannah Fox says
I love all the comments so far — let’s keep this going!
Examples from this morning’s online conversation:
Claudia Williams shared a link to a Washington Post story about how Boston’s Beth Israel Deaconess is piloting a program that gives patients electronic access to therapists’ notes (known as Open Notes). OpenNotes exposes the false boundary set between a clinician and a patient. They are, in fact, on the same side, not opposite sides, and therefore can share the same information about the issues they are trying to solve together.
Morgan Gleason took the stage at Cleveland Clinic‘s Patient Engagement summit to say, “You went to doctor school to be a doctor. There is no patient school that teaches us how to be a patient” and “Patients should have a voice.” If you haven’t seen her video, check it out: I am a patient and I need to be heard which lays out why the way she is treated in the hospital is unacceptable. She is asking questions that get at the heart of the false boundaries in health care.
What else are you seeing, doing, hearing out there?
Gilles Frydman says
I am not able to give you more examples but I still want to add something 🙂
I am dreaming of the day when things will really be different and the clinicians will also have access to the notes the patients are writing about them, about their methods, strengths and weaknesses. Then we’ll have a participatory system and maybe the doctors will be able to improve the care they’ll provide for the next patients. Being able to see what your customers say about your services has become an absolute necessity in every industry. What are we waiting for in Medicine?
Fake boundaries will remain in place, one way or the other, until the patient perspective becomes a fully integrated part of the system. No doubt, Open Notes is an important move for more transparency. Nonetheless, it still keeps in place the unidirectional nature of US medicine where care is delivered by a doctor to a patient. It’s far from the vision of health, managed by the patient, with the help of a variety of means, including all those available today in the healthcare system.
Susannah Fox says
Wow. You are absolutely right. Our dreams aren’t big enough yet.
To Dave’s point about “dissolving” boundaries — maybe Open Notes is the solvent that will erode the wall between patients and clinicians enough so that a patient might suggest, at their next visit: Why don’t you write in the record that XYZ happened? And maybe the clinician will respond: Great idea! You put it better than I can, why don’t you take the keyboard and type it in yourself?
e-Patient Dave says
It’s not obvious at first glance, but that WaPo story is about a BIG extension of OpenNotes: at first it was medical/MD notes, but now psychotherapist notes (mental health) are being shared.
For those who don’t know the OpenNotes saga (patients viewing what their doctors write in the system), you can review the history in the blog posts on e-patients.net.
e-Patient Dave says
p.s. I hate my code typos in blog comments. I eagerly await the day when this site has the Comment Preview plugin so I can be a safer participant, given my attention issues. Sorry.
Susannah Fox says
Thanks, Dave, for persevering!!! I do need to get that plug-in. It’s on the To Do list 🙂 Meantime, I’m happy to fix ’em.
Shail Mehta says
I couldnt agree more. The boundaries between patient/doctor especially as it relates to technology are annoying. I won’t rehash what Dave has so eloquently detailed on sensors and diagnosis. Sensors and devices provide a phenomenal jump in the ability to break these boundaries. Till patients have to enter data/report on data there will always be gaps in information. If doctors can reliably digest and use the information that these devices/sensors capture – they can then trust this data to make better care decisions. On the flip side EMR/doctor’s systems are too focused on billing rather than the disease(s) that are being treated.
Changes to both of these together can create a system where care is collaborative and decisions are made jointly.
Susannah Fox says
When I toured the NIH Clinical Center on Rare Disease Day 2014 (PDF agenda) the tour guide pointed out that researchers and patients share space. That is, the labs were built to be across the hall or next to patients’ rooms. I didn’t snap any pictures because it felt too intimate, but imagine neighborhoods of rooms devoted to a certain condition — all the clinicians, patients, and family members sharing a common hallway. It was beautiful, both in vision and in reality.
The one place I did snap some photos was the atrium. It soars 5 stories up, but not in the way that Michael Graves famously mocks as “a showplace to hang plaques honoring their donors.” No, not at all. All the patient and family services are arranged in a ring on the first floor so it’s easy to get all the “business” affairs taken care of and then sit down in an arm chair or on a couch to have coffee or lunch (serviced by Au Bon Pain). The chairs and tables are sometimes moved so that a choir, band, or quartet can play. The music fills the space, luring patients and clinicians out of their rooms to listen, at every level of the atrium since it was designed to become a concert hall. The acoustics are apparently very good and (I love this) patients can wheel or walk out of their rooms and remain somewhat out of sight on the upper floors if they care to, even as they have a front-row seat.
So imagine: patients, families, and researchers all together at work or at play. Drawing blood, monitoring vital signs, and listening to an aria, all at the same time, dissolving the boundaries between them.
Matthew Trowbridge says
Susannah – thanks for your continued efforts to forward this conversation and vision. I think the mental exercise of identifying ‘false boundaries’ is powerful and broadly useful; clearly applies to issue of patient / doctor collaboration.
Key question for me is how to successfully achieve an at-scale shift in ‘standard of care’ to prioritize shared information, data, decision-making, etc. What are the systematic changes needed in things like medical education, electronic medical records, liability laws, physician quality & productivity metrics, etc to create a ‘culture shift’ toward patient-centered care?
There are so many (appropriate) demands on physicians to play a new role in various aspects of healthcare — particularly primary care physicians. However, for most doctors, the practice environment hasn’t changed in a corresponding way. It’s often hard (and even risky) for most doctors to deviate from standard practice protocols.
In short, what steps can we take together to shift the ‘norms’ around doctoring to make patient-centered and collaborative care easy, safe, sustainable, rewarding and expected for ‘most’ physicians in practice?
Susannah Fox says
Great questions. Some would call the “at-scale shift” by another name: “boiling the ocean.” But I think — and I have seen — examples of how small changes can go wide. For example, first solve a significant problem in one small area such as pediatric oncology and hope that it spreads across all of oncology — and then to other specialties.
What are the ripe opportunities?
e-Patient Dave says
> So imagine: patients, families, and researchers all together at work or at play.
> Drawing blood, monitoring vital signs, and listening to an aria,
> all at the same time, dissolving the boundaries between them.
I love the image of everyone being engaged in it together. Another approach, which I saw 2 years ago at Frauenshuh Cancer Center new Minneapolis, feels similar somehow: on a chemo day, instead of going from place to place, the patient gets situated in a comfortable suite/room for the whole day. Providers come to you; there’s a mini-kitchen for snacks; the chemo chair can elevate to become an examining table. I wasn’t there as a patient, but I felt this this had been designed by someone who’d really been there.
One natural limitation of your illustration in this post is that it’s inherently about care in a hospital, so it’s about the boundaries within the hospital. (Not a problem, just a limitation.) We could ask, what factors require that certain things still be done in a hospital?
My oncologist says that for my disease, some new treatments are pills, not the intensive in-patient treatment I got. It’s remarkable to think that someone could get a benefit like mine even if they lived in a frontier area.
Gilles Frydman says
Dave’s remark about pills vs in-patient treatment reminds me of what happened during the early days of that shift in oncology.
To a normal person the shift to a pill would appear to be a no-brainer. It’s so much easier, on so many levels, to get treatments in this manner. But the pharma industry had to fight really hard to get the new paradigm of pills as oncology treatments accepted at/by the FDA. They had to bring in the help of many patient advocacy organizations who were just beginning to gain some power.
As usual the “professional” side of the health care system was fighting against this change, finding many reasons why this would turn out to be dangerous. In fact, the only real danger was to the massive income the hospitals were deriving from these in-patient services.
That’s why the false boundaries have such stay. They help keep the money flowing. In many cases it’s not a flow, it’s a gush!
Susannah Fox says
I will need to write a separate post about this, but I can’t resist sharing the example I found today.
There exists a series of excellent, informative videos about end-of-life treatment that have been peer-reviewed and, in trials, shown to improve care…and yet they are behind a pay wall because the creators’ vision is clouded by false boundaries.
How Not to Die
“On the very first night of his postgraduate medical internship, when he was working the graveyard shift at a hospital in Philadelphia, he found himself examining a woman dying of cancer. She was a bright woman, a retired English professor, but she seemed bewildered when he asked whether she wanted cardiopulmonary resuscitation if her heart stopped beating. So, on an impulse, he invited her to visit the intensive-care unit. By coincidence, she witnessed a “code blue,” an emergency administration of CPR. “When we got back to the room,” Volandes remembered, “she said, ‘I understood what you told me. I am a professor of English—I understood the words. I just didn’t know what you meant. It’s not what I had imagined. It’s not what I saw on TV.’ ” She decided to go home on hospice. Volandes realized that he could make a stronger, clearer impression on patients by showing them treatments than by trying to describe them.”
Advance Care Planning Decisions
Help me to understand why Dr. Volandes would tilt at windmills and insist that only hospitals have access to the videos. Only a few dozen have subscribed! As a self-professed radical, why does he not post the videos publicly?
And if he does not, what’s to stop regular people from posting videos that tell their own stories? You know the answer: Nothing.
I did a quick search on YouTube for “cleaning feeding tube” and “CPR” and found a wide range of home and professional videos – “dissolving boundaries” alert! What is lacking is the data Dr. Volandes includes in the ACP videos, such as how CPR usually doesn’t work — far from the success rate you see in the media.
The cat is so far out of the bag that few people even remember there ever was a bag. It seems like the rest of the world understands this — and yet there are hold-outs in health care. Why?
kathy kastner (@KathyKastner) says
Oh Susannah, as you know I’m all about dying and death (in the best possible way 🙂 Before a tweetchat got me going on understanding implications of life-prolonging interventions (resulting in http://www.BestEndings.com) I produced an Advance Directives video that broadcast in hospitals via patients bedside tvs. I have data from patients pre and post watching in hospital, and a smaller sample size from Brown Medical Center for pre/post viewing in medical office. It’s all of 2 minutes, but even so results showed an “Aha!’ now I get why I should do an ACP.. but also showed help was needed to complete. Shall I email the deck workshopped at the Society for Teachers of Family Medicine? Meanwhile, here’s a link to the video (and others that broadcast in hospitals across North America eg Johns Hopkins, UCLA, Beth Israel Boston, NY Presbyterian) .When the hospital-based tv network wound down, the web opened up! http://www.ability4life.com/video-centre/
Philippe Ameline says
(Another) Great post, Susannah,
To make it (very) short, don’t you think that the greatest false boundary is the very term “Patient”?
Susannah Fox says
Thanks, Phillippe! My apologies for the slow reply. I have been offline for much of the past few days, visiting a dear relative in the hospital (and once again observing what Rahul Nayak tweeted, “aliens observing current medical care would assume the paper or computers were ill based on time spent”).
“Patient” is indeed a divisive word. We all slip in and out of that identity, don’t we, depending on the state of our health? The pendulum swings perhaps more slowly during a long illness, or at the end of life, as more and more time is spent in the health care system and “patient” is one’s default state of being. There is value in giving oneself over to care, either by professionals or by loved ones. There is also value in recognizing our agency, our power as individuals who are not always content to be passive patients.
Maybe we need more words to describe the spectrum instead of a term that emphasizes a stark division between being an object vs. a deliverer of care.
Philippe Ameline says
Thanks for answering and no need for apologies, a forums is not real time medium 😉
“Patient” is indeed a divisive word. All the more so as chronic diseases can make it a full time label for a large part of many people’s life. All the more so as it becomes trendy to use the term “health” instead of “medical” and to push healthy people toward primary prevention and early cancer detection.
My own definition is that the term “Patient” should only describe a person as seen by a medical professional. Even a genuinely ill person shouldn’t get called “patient” by people not in charge of treating her.
Hence, “patient” should define a relation, not a state: you can be “Dr Smith’s patient” but not a patient in your everyday life unless you embody your disease(s).
Words count, and I am deeply convinced that false boundaries are easily created from artificially extending the context in which concepts make sense.
Sara Riggare says
Susannah, as always it’s a pleasure reading your posts with all the wonderful insights and the comments add so much!
I hope you don’t mind if I post a link to my latest blog, based on discussions with you and so many others, some of which have already commented in this thread.
This morning I was thinking: What if we’re looking at the whole thing from the wrong perspective…..?
Susannah Fox says
To those following (or catching up on) this thread, you might enjoy reading my comment on another post, in response to a question about Christensen’s value networks:
Lorraine Johnson says
Clayton brought us a new world of thinking. Two of your points that resonate:
The false boundary between lay expertise and professional expertise.
The false boundary between patients and researchers. Why shouldn’t research questions be generated by people with the disease being studied?
These are critical because as Clayton pointed out disruptive innovation comes from “outsiders”–the “incumbants” have vested interests and legacy viewpoints rooted in the past. This means that if there is any progress on a disease it is in incremental steps while patients often are catapulted towards oblivion by their disease. Patients don’t have time to wait.
Change comes from “without” by those who have true skin in the game. This is why we launched the MyLymeData patient registry, which has enrolled over 12,000 patients. Patient driven research–one study published, two more on the way. I’ll end with two quotes:
“Orville Wright Did Not Have A Pilot’s License” (McKenzie, Orbiting the Giant Hairball).
“While individuals may not always be correct, they have more intimate knowledge of themselves, more reason to get it right, and more motivation to be dogged in pursuit of their interests.” (Ezekiel Emanuel)
Susannah Fox says
Great example, Lorraine! Thank you for re-igniting this thread.
You might also be interested in this post, in which I lay out a model for the stages of peer-to-peer health connection. I’d put the MyLymeData patient registry at stage 3 (1 – you found each other; 2 – you began formulating solutions among each other; 3 – mainstream institutions/people with resources have taken notice and started to help). But see what you think, please, and let me know!