This post is about a paper I co-authored in JMIR in August with Bertalan Meskó MD PhD, Patient Design: The Importance of Including Patients in Designing Health Care. It’s challenging and perhaps a bit confrontational to conventional healthcare, because it directly addresses a growing reality: while healthcare strives to be more “patient centered,” what they’re doing bears no resemblance to patient power. To the contrary, it’s pure tokenism. The paper explicitly asserts this, and here on the SPM blog I want to tie the whole subject back to our founder’s work and the principles our society stands for.
The whole story is summarized in the paper’s abstract, but academic abstracts are annoyingly hard to read, so as one of the authors I want to take the liberty to unpack it here. Here’s the first sentence, broken into phrases for discussion:
- “A paradigm shift is underway in the patient-clinician relationship…
- The old paradigm is that the know-nothing patient comes with a need to the clinician, who knows everything worth knowing.
- The shift is “driven by irreversible changes in information access…” (Knowledge is power, and it’s no longer bottled up the way it used to be. It’s on the internet.)
- But our entire health system is managed as if this hasn’t changed: “yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly…
- “…even though we call it “patient centered.'”
Lots to think about, but that’s just the first sentence of the abstract.
The article goes on to spell out the ways this is a problem, and makes the point that merely inviting people into the room is absolutely not what we’re calling for:
It is no longer viable for patient centricity to mean “We were thinking about you while we made our decisions.”
No; real patient power will happen only when suitable patients are actually helping to run the show – or sometimes even solving things on their own, as the OpenAPS community are doing for Type 1 diabetes.
The rest of our paper’s abstract is similarly broken out into bullets below. But first I want to tie it back to our founder.
Doc Tom Ferguson, the visionary whose work inspired our Society, anticipated (as far back as the 1970s) a world where patients would be increasingly self-reliant. In the 1980s he published a magazine, Medical Self-Care, and then a compilation of its articles in book form. In 1994 he was the medical editor of the Whole Earth Catalog Millennium Edition, just as the Web came along. Indeed, in the e-Patient White Paper (completed posthumously), the ultimate chapter was “The Autonomous Patient and the Reconfiguration of Medical Knowledge.”
The reconfiguration of medical knowledge. He saw that reconfiguring “who knows what” would alter what’s possible for medical care and even for self-care. Yet two decades later we still hear of recently graduated medical students who’ve been taught to discourage patients from googling.
This must stop. It dooms those newly minted doctors to starting their careers two decades behind reality.
The abstract, parsed:
Let’s walk through the abstract, unpacking it to one sentence at a time.
The disconnect we must address: “A paradigm shift is underway in the patient-clinician relationship… [It’s] driven by irreversible changes in information access.” [knowledge is power, and it’s no longer bottled up the way it used to be]
“yet the model under which clinicians are trained, care is conducted, and care delivery is designed has not changed significantly… even though we call it “patient centered.'”
The underlying issue: the reconfiguration of medical knowledge, and who actually has it. “Humanity endured centuries in which even doctors had little idea what the patient’s problem really was.” (Until we understood things like bacteria, there was little a doctor could do to solve a patient’s serious problems.)
“Science slowly solved that…” [especially the 20th century explosion of medical science] “and for a century, only doctors could know what was worth knowing” [Once real scientific knowledge existed, most of us had no access to it].
“Today, the rise of the internet and digital health has led to the end of that era.” It doesn’t make us physicians but it sure lets us get at the knowledge. This opens the door to the big question: What do we do with this new era??
“We are already witnessing early signs of the era of participatory health: genuinely empowered people living their lives and managing their health according to their own priorities …
“in partnership and consultation with physicians as needed.
“This may feel like a threat to the physician’s sacred role, but it is no more so than when physicians adopted informed consent and then shared decision-making.”
But “patient centricity” is not patient power: “In the 2010s, many pharmaceutical, medical, and health care companies started to use patient centricity as a mantra.
“We argue that to drive this paradigm change fully into existence, we need to shift ‘patient centricity’ from a relatively passive process, driven by industry needs, into a far more active, collaborative process driven by both parties’ needs and preferences.”
“To build this new world of practice and workflow, we simply must engage with patients as true partners. …
“To achieve medicine’s new potential, it must be optimized around the wants and priorities of the ultimate stakeholder—the party that has the most at stake in how it all plays out: the patient.
“Patient design is the approach that can make it happen.”
Call to Action
We hope you’ll share the article’s thinking about patients as design partners with colleagues. We hope you’ll cite it in your own publications. Most important, we hope you’ll think about it.
The image theme of our website is a series of photos from Habitat for Humanity. It shows people working together to build something new.
That’s the kind of collaboration we have in mind. Let’s change this …
“We were thinking about you while we made our decisions.”
… to this – full collaboration:
“We enjoyed working with you while we designed this together.”
Dave, great article. Inevitably we all must deal with a healthcare system that pays lip service to patient choice and, quite frankly, is not very interested in partnerships with more stakeholders. But, as you say, Dr. Google is here, for better or for worse, and if the system won’t adapt, we patients will, if for no other reason than healthy outcomes for ourselves or our loved ones depend upon it. So I have worked for three years building a personal health record app that can organize all our relevant data in one place and not depend upon faxes, binders, portals, or callbacks from assistants. My app is called Tidy Health PHR and is available for free on the App Store. Medical knowledge is where to start. This is one physician’s small contribution to a future where patients may have the confidence and tools to manage their own health priorities.
As I imagine you know, what you’ve done with the app is exactly what I called for back in 2009! So glad to see it happening.
We still need clinicians who welcome patients who do have that data together. What have your users’ experience been with that?
Well said, Dave. As you know, healthcare organizations routinely survey patients regarding their experiences. The closest that the dozen or so commonly used Press Ganey patient satisfaction questions come to exploring the level of mutual partnership between patient and clinician is one that asks about the “care provider’s efforts to include you in decisions about your treatment”. While this question is a start, it still implies that the decisions are fundamentally made by the clinician, while the other patient experience questions focus on whether the patient was satisfied with being on the receiving end of medicine. These survey results are used by JCAHO to help determine accreditation and by some payers to help define healthcare delivery organizations’ payment levels. In addition to changing hearts, minds, we need to measure “PM-ness” and the measurement needs to ultimately be linked to the financial interests of healthcare organizations. Money talks.
Well said, Mary! “include you in decisions” does seem to carry an implied “THEIR” decisions, doesn’t it!
Many readers of this site are well aware of what a struggle it was to get the concept of shared decision making into medical thinking. A real problem today, at least in the US, is that the people who pay the bills (insurers) too often don’t care that dialog takes longer than robotic “I’ll do this to you.” I hate that clinicians feel so burned out over things like this.
But the article’s point stands: including patients as genuine *partners* is a different game, and the only game worth playing.
Thank you so much Dave for this follow-up article to the JMIR publication. It really helps me structure my argumentation when it comes to raising the awareness.
The pride Swiss institutions have when announcing they are “patient-centered” (but not actually working WITH patients) is a tricky bubble to burst, as they feel they’ve come so far already. Explaining that their setup is indeed tokenism, well, it’s better to have the goods to back that up.
Understanding the difference between partnership and tokenisme can be tricky and the boat is tough to rock. We need to build a case and do it in a gentle way to not come off as the “difficult patient”, which impedes our message. Quite the balancing act!
Much work yet to be done! Let’s keep at it!
I’m late in replying to this, Christine. I agree about being cautious in telling someone their efforts are tokenism, unless you feel they need to be flat-out insulted and want to start a fight.
My approach to such things is that to point out, clearly but gently, that unless the lower-down party is actually engaged in the work, and can veto things as much as anyone else can, they in fact have a token seat at the table while others do *their* work.
I’m late to the party here, Dave, but appreciate this post very much and am also delighted to see proposed additions to the Hippocratic oath from Bertalan Meskó et al. From my patient perspective (as a person living with one of many rare conditions, which are often initially misdiagnosed as ‘functional’/psychiatric conditions) I am concerned about what gets written in our notes and the power imbalance involved. For example, people with a diagnosis of Pernicious Anaemia are accessing their medical records and finding vague terms like ‘functional’ or ‘MUS’ in them which have not been discussed with them during their consultations and which can be very hard to get redacted. Likewise p/w FND are not being told their diagnoses during consultations but find them in their clinical letters, sometimes accompanied by brief statements such as ‘this lady has FND so I am discharging her from neurology’. This can be confusing for patients, especially if they’ve got their hopes up because they’ve been told ‘I know what this is and it’s a breakthrough in neurology. I will write to your GP.’
So I wonder if the updates to the Hippocratic oath could include a statement about not recording anything in the notes (which can influence other health care providers and not always in a good way) which has not been discussed during consultations.
Another imbalance of power is illustrated by the FND subtypes paper in that there was patient representation (albeit not directly from someone with FND) in the FND ‘inclusion’ paper but there wasn’t in the subtypes paper. Likewise Kanaan’s ‘territorial claim’ paper (which accompanied the FND subtypes paper) is now mostly behind a paywall (although I realise this may not be of his doing or desire) so our understanding of it is limited and any commentary about it is also limited as a result.
I am also interested in what gets left out of our clinical notes, without us knowing about it. After consulting at ‘the sleep clinic’ regarding the impact of sleep deprivation on people with neurological conditions (specifically Mal de Debarquement Syndrome, which I’ve lived with on and off since 2003) I was told I’d been sent a ‘copy’ of the clinical letter. However via a series of comedic clerical errors I found out that a whole paragraph had been sent to my (then) doctors that wasn’t sent to me. It was the ‘mental state’ report and I gather this practice of not allowing patients to read it is systemic and wasn’t surprised that when I asked why it hadn’t been sent to me the hospital Trust kept changing their story. The report was, like most of the rest of the neuro-psychiatrist’s notes, largely a work of fiction and while unreliable narrators are great fun in literary fiction they are no fun at all in a clinical setting.
The wider perspective is that when it comes to the term ‘functional’ we know from Kanaan et al (see ‘the function of ‘functional’ a mixed methods review’ ffi) that it is, effectively, a deliberately ambiguous code word that can be used to infer one meaning to patients and another to our caring doctors. This presents another hurdle to Participatory Medicine – one that needs to be recognised as disempowering and, potentially, harmful to patients, our primary care providers and rare conditions researchers.
Thank you, Polly. You mention hospital trust – it sounds like you’re in the UK, yes?
If all of medicine implemented fully open notes, would it theoretically solve the disconnects you’re talking about? (I presume you know about the OpenNotes organization and the idea of (lowercase) open notes in general.)
Thank you, Dave and yes, I am in the UK where it cost me £50 to access my medical record, only to find that several notes had been redacted entirely. When I spoke with the (then) CEO of the Migraine Trust she asked me about my experiences in the NHS so I mentioned this, to which she replied ‘that’s all too familiar to me.’ It’s well known that redactions in notes cause stress for patients and it’s well known that stress isn’t good for people with neurological conditions so … go figure, as they say ;) It took me 3 years (and a brilliant GP) to get the redactions lifted. But to either redact the many inaccuracies in my medical record or have them changed would take up a great deal of potentially fruitless unpaid time, especially since (as per the information in the open notes information) changes are made at the discretion of doctors, not patients.
In answer to your great question, open notes (which I’ve been reading about more since the laws about access to notes changed in the UK) may help with some of the disconnects on a client/provider level, especially if something along the lines of ‘discuss what you write, write what you’ve discussed’ becomes enshrined in the Hippocratic oath. But on a macro level there’s still a lot of work to be done since, for example, the term ‘functional’ is used to aid diagnostic acceptance because it doesn’t overtly point to a mental health disorder. Yet FND is in DSM so people feel hoodwinked, labelled, gaslit and abandoned and Prof O’Leary’s relatively recent tweets about FND ed being ‘reckless’ so the practice is ‘reckless’ too rang true to me. All of which may be compounded by the seeming inability of the FND Society to engage in effective and empowering patient engagement, since their current MO comes across to me as ‘we control the narrative and you’re not welcome here’.
There is also a disconnect between the ‘official’ misdiagnosis stats for FND and the reality from the patient perspective as evidenced recently following Ms Dion’s public announcement of her Stiff Person Syndrome dx – but there are many other examples, especially from people who are ‘living rare’.
I’d be interested in reading your thoughts about the lack of patient representation in the FND Subtypes paper and the full content of the accompanying ‘territorial claim/expansion’ commentary from Kanaan from the e-patient perspective.
All best wishes,
Polly