Patients have a unique expertise that is often overlooked. The day-to-day life experiences of a patient and the wisdom they gain as they navigate their healthcare journey are invaluable. In fact, that expertise is a key driver in helping to shape the future of healthcare. However, that expertise is often missing at key medical conferences alongside clinicians, advocates, policy makers, administrators, and other key healthcare sectors. During a time when managing the costs of care can place great burden on patients, the added expenses of having their voices heard alongside others can be difficult to manage.
A few buzz words in healthcare most of us have used or heard recently include:
Patient Engagement. Patient Voices. Patient Partnerships.
How do we move these terms from theory and one-off activities to practice? How do we ensure that the “key experts” –those navigating the healthcare system that we’ve spent billions on trying to fix—are alongside us at key meetings paving the path forward?
In 2012, the Society for Participatory Medicine created a patient travel scholarship fund to help patients attend the inaugural Cinderblocks conference in Kansas City. Ten patients were awarded travel scholarships thanks to a crowd-funding campaign run by Regina Holliday and gracious donors that recognized the importance of patient participation. Our mission at the Society for Participatory Medicine is to continue that work, but we need your help!
Cinderblocks 2 will be held on June 4-6, 2015 in Grantsville, MD and organized by the most passionate advocate I know, Ms. Regina Holliday (aka Rosa Parks of Healthcare). Doctors 2.0 & You will be held in parallel on June 4-5, 2015 in Paris, France, and organized by the lovely Ms. Denise Silber, a healthcare social media influencer. Our goal is to ensure patients can participate at both conferences through patient travel scholarships. Awardees will share a blog post on their experiences at these conferences through the lens of a patient.
Lucien Engelen has also put a Patients Included spotlight on conferences that have embraced patients as partners. Let’s work together to make this a standard practice, as opposed to a deviation from the norm.
- If you are a patient and would like to be considered for a scholarship to either conference, please submit a blog post no later than March 31, 2015. Details here.
- If you are a gracious donor and would like to contribute to SPM’s Patient Travel Scholarship, please click here.
Let’s put theory into action and find a way to truly partner with patients!
In a study report hitting the digital wires on Health Affairs at 4pm Eastern time today (March 2, 2015), a group of researchers are reporting the results of a longitudinal study of Patient Activation Measure (PAM) impact on cost and outcome metrics from a large study cohort. The results show that activated, engaged patients have better outcomes, at lower costs, than do their less-activated peers. For expert/savvy patients and other policy wonks, this might seem a little like a “dispatch from the desk of Captain Obvious,” but the more research-study bricks built into the wall of what ePatient Dave calls “people who are informed better, perform better,” … well, this is a wheelbarrow full of bricks.
We’d bet good money that anyone who identifies as an e-patient has been led to believe that their desire to participate actively in their medical care marks them as a “demanding patient.” The perception of demanding patients is that they’re behaving like spoiled divas at a medi-spa, with their demands driving up incidence of unnecessary or inappropriate care.
“In this issue of JAMA Oncology, Gogineni and colleagues report on their empirical inquiry into patient demands, a nemesis that proves to be more mythical than real. The study hypothesis—that patient demands for treatments and scans drove unnecessary costs—was spectacularly unconfirmed when using data collected from physicians themselves. Only 8% of the patient-physician encounters at 3 cancer centers in Philadelphia involved a patient “demand,” and the majority of those “demands” were viewed by the physician as “clinically appropriate.” Suddenly, the demanding cancer patient looks less like a budget buster and more like an urban myth.”
Dr. Donald Lindberg, long-time director of the National Library of Medicine, is surely the single most-quoted authority from “Doc Tom” Ferguson’s e-Patient White Paper. In almost every speech I’ve given in the past five years I’ve used Doc Tom’s quote of Dr. Lindberg in the White Paper:
“If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.”
It’s a hoot to see people’s faces as this sinks in: “Holy crap, it’s not realistic to expect doctors to know everything!” The power of this realization is that if a patient shows up with an article the doc hasn’t seen, it’s no insult to the clinician. Instead, the door becomes open to partnership – to participatory medicine.
To have this statement come from a highly respected member of the establishment has been of transformational importance in our work. Now, Dr. Lindberg is retiring at the end of March, and the Library has issued a call for public comment:
Our Society for Participatory Medicine is all about effective patient-clinician partnerships, and to us that simply requires patient access to all information about the case. As SPM co-founder Dr. Danny Sands often says in his speeches, “How can patients participate if they can’t see what I see??”
So, naturally, this blog has been one of the biggest, loudest boosters of the OpenNotes project. (Our many posts are listed here, especially the first one and the results post.) There are many, many stories of how healthcare works better – happier patients, better outcomes – when patients are empowered to collaborate by not being kept apart from what their “hired experts” (docs) have written.
But in my travels I’ve often heard people talk about the cultural and policy differences between US healthcare and other countries, so I’m thrilled that in the big Patient Centred Care supplement that the BMJ published yesterday (see our post with the list of articles), they included a major (2300 word) article on the US experience.
Prepping for this post, lead author Jan Walker told me, “Transparency is a worldwide concept” – the article adds to previous OpenNotes publications, citing similar initiatives in other countries! Estonia, Sweden, and even parts of the UK. (While in London to record the podcast that’s in the issue, I got to meet Dr. Amir Hannan, who’s been sharing notes with his patients for years. He too was in the podcast.)
So when you tell friends about OpenNotes – or when you ask your care providers to give you OpenNotes – let them know:
- It’s no longer a fringe thing – over 4.8 million Americans in many health systems have access to their records
- It’s no longer just in America.
- Now it’s got the endorsement of the editors of the BMJ
- It works. Nobody who’s implemented it has said “Those findings in the articles are not happening here.”
The founder of our movement, “Doc Tom” Ferguson, was fond of citing futurist and science fiction author William Gibson, who famously said “The future is already here – it’s just not evenly distributed yet.” Be bold – change the world – ask for it, and point to the evidence.
This is a great week for SPM, for our colleagues at the Stanford Medicine X conference, and for everyone else who’s been working for years to shift medicine’s thinking about the role of the patient: Yesterday the BMJ (formerly British Medical Journal) released a big, 21 article “Spotlight” supplement on “patient centred care.” The print edition is due out tomorrow, Feb. 12. The list of articles in the Spotlight is below. Important: they’re all open-access – no subscription required.
If I’m correct, this is by far the biggest boost (and acknowledgment!) our movement has seen so far. It brings a rich diversity of voices, patients and clinicians alike, from at least eight countries, all talking about patient-physician collaboration, in one of the most credible medical journals in the world.
I want to specifically call out the SPM members who contributed or are mentioned in it. Here’s my list so far:
One of our Society’s best kept secrets is the composition of our membership. And lately, some of my best collaborations are coming out of conversations with fellow members. Last week, as I frenetically packed for a trip, I was chatting on the phone with our own e-Patient Dave. We were talking about the Movement, some of its key players and the nature of problems.
Specifically, we were discussing some pioneering work to help end hunger in the 1970s. According to Dave, one leader of that movement —I trust he’ll pipe up in the comments and fill in some of these details —described problems as having three phases: deceptively simple, overwhelmingly complex, and then, profoundly simple. That construct struck me as feeling incredibly familiar, even though I was hearing it for the first time.
When I talk to people who aren’t as familiar with the movement —patient muggles? —I often describe ePatients as existing on a continuum. Many become ePatients out of necessity; they seek information on a new diagnosis. Those who continue along the continuum feel value in connecting with others and then as serving as guides for those just beginning their journey.
Along the way, virtually every ePatient, participatory provider, and advocate finds some sticky wicket, some problem which seems remarkably simple. My doctor is always late and makes me wait! If they were [insert any number of ideas here: more considerate, on time, technically literate…] then this wouldn’t happen. I don’t have to wait to see my dog’s vet! Sound familiar? Or sometimes its more like: giving me access to my records is a right. I deserve the same real-time access to information about me that my doctor sees. All the hospital has to do is flip a switch. I’m picking some pretty simple examples, but bear with me.
In these examples, both the problems and the solutions seem pretty simple, right? Doctor is late…text me before I leave the house so I don’t have to wait in the waiting room…problem solved. And, to make no bones about it, that’s a pretty clever solution to a nagging problem. So what happens next? ePatients, advocates, our fellow Society members speak up, addressing their own challenges and proposing simple solutions. The problems are real, and the solutions are smart, so they get invited into the tent. We speak at conferences, we write blogs, we tweet.
And once we’re in the belly of the beast, we see it all. Holy cow this is complex! What do you mean the doctor doesn’t work for the hospital? Why does the lawyer say they can’t text us? And what’s the deal with this EMR being so technologically opaque? And so we sigh. We throw up our hands. We call the entire system a broken mess. Perhaps you’ve heard colleagues, including yours truly, say something like: “we should blow the whole system up and start over.” Or sometimes it’s: “the real disruption is going to come from outside the system.” Again, like our problems above, the sense of overwhelming frustration and the hands-in-the-air-hopelessness are completely rational. Maybe, too, the ideas of starting fresh or looking outside the industry are valid.
Then something happens. As ePatients, advocates, and participatory providers continue on their journey, a zen-like simplicity emerges. They see problems differently. And because they are seeing them differently, the solutions are also different. They are simple. Only this time, they are profoundly simple. My doctor runs late, so I now take care of myself and don’t go to the doctor. Consider the #WeAreNotWaiting community, the group using existing technology to build an open source artificial pancreas system. In a recent talk, one of the community’s leaders, Dana Lewis, was asked if she told her doctor about her artificial pancreas. Dana’s answer: “why would I?” Pretty simple solution, become your own doctor. And with a virtually flat line blood glucose graph, who would argue her approach?
These two intersecting models —the nature of problems and the ePatient journey —tie together perfectly. Further they are the recipe for innovation in healthcare. Being able to clearly see a problem and reframe it is a hallmark of the the design process and that’s exactly what happens when ePatients go from deceptively simple to overwhelmingly complex to profoundly simple. ePatients who unravel problems and find profoundly simple solutions are both aided by and then advanced along their own journey. By being able to see problems and propose solutions they are invited into the discussion. Once inside, the overwhelming complexity fuels a burning need to simplify and solve problems differently. What results are more elegant, simple solutions, the creation of which moves the ePatient further along their journey. And that’s a pretty neat thing.
SPM member Janet Freeman-Daily, who’s an active voice in the #MedX and #LCSM communities, alerted us to a petition on Change.org that speaks directly to the principles of precision medicine – called for by the President in a White House event attended by our own Nick Dawson – and keeping the regulatory environment from standing in the way of actually delivering that precision medicine.
Quoting from the petition:
The FDA’s proposed “Framework for Regulatory Oversight of Laboratory Developed Tests (LDTs)” attempts to regulate LDTs as if they were self-contained devices (such as stents) or commercial test kits. This won’t work. Getting the best diagnostic and treatment outcomes from available specimens relies of the practice of medicine, which the FDA is not supposed to regulate.
The proposed regulations state that once a companion test kit obtains FDA approval, any modification to the test components or any change in specimen type requires separate FDA approval before the LDT can be offered to patients. If no companion test exists for an oncogene, an LDT may offered to patients without obtaining FDA approval IF it is offered ONLY to patients in the same healthcare system as the laboratory that performs the test.
The proposed regulations require laboratories to submit all cancer-related LDTs for registration and listing. In addition, LDTs for which a cleared or approved companion diagnostic exists (like BRAF-driven melanoma and ALK-driven NSCLC) must be submitted for financially prohibitive and lengthy premarket review. Many labs, including those in major cancer centers (which currently offer hundreds of LDTs), might not have the deep pockets or other resources to seek FDA approval for their LDTs and would have to pull LDTs from their list of patient services, or even have to close. This would impede not only access to potentially life-saving diagnostics, but impede innovation as well.
Hit the link in the first graf, head over to the Change.org site, and read the entire petition for yourself. Sign it, if you’re in favor of its principles.
The famous @HurtBlogger, chronic pain patient Britt Johnson, has announced that she will LIVE TWEET 48 hours of “her chronic life,” MONDAY AND TUESDAY, Feb. 2-3. She has no idea what will happen – might be ordinary, might be nasty. (Long ago the radical group The Last Poets sang “The revolution will not be televised … it will be LIVE.”)
Britt is one of the “e-patient advisors” at our cousin event Stanford Medicine X (as are SPM members Nick Dawson, Hugo Campos, Jamia Crockett, Sarah Kucharski (@AfternoonNapper).) (Well, we’re not formally cousins, but obviously we have a lot of overlap in our “e-patient DNA.”)
Britt’s in the Pacific time zone. Her last tweet at bedtime Sunday:
Off to bed – tomorrow I begin 48 hrs of #ChronicLife live-tweets of my disease. We’ll see what happens, not so great tonight…
— Hurt Blogger | Britt (@HurtBlogger) February 2, 2015
Last Friday, 200 patients, advocates, scientists, doctors and researchers gathered at the White House to hear President Obama’s launch of the Precision Medicine Initiative. According to the President, precision medicine aims to tailor treatments to each individual. President Obama likened precision medicine to how we match blood transfusions to blood type – only now we should aim to match a wide range of treatments to a wide range of varying genetic and biounique markers.
The initiative begins with a budget request for $215 Million in new funds. The funds will be used, mainly at the NIH, to: