All, if you have a story where you were affected by being involved (or not) in a medical decision, please see my request at “Help Me Represent You” below. Same if you have points you want me to bring to this seminar’s attention.
I feel extremely fortunate to be attending a five-day Salzburg Global Seminar, in Salzburg, Austria. I find myself hesitant to write about it, because on the one hand I’m excited about the few people I know who are on the faculty, but I’m completely ignorant about the others. So anything I say would be an incomplete description. But hey, that’s part of blogging by just plain citizens, right? So here goes – give me your thoughts, in comments, so I can represent participatory medicine.
History and context: Salzburg Global Seminars began in 1947, as an initiative to restore Europe after World War II. They host seminars on many topics. This event is the second of a three-part series on healthcare.
For me this event resonates: it’s a sequel to a pivotal moment in patient-centered care – a 1998 Salzburg Seminar, where 69 people from 24 countries created a vision of what healthcare would be like if there were no constraints. It led to the 2001 paper in Health Expectations, “Healthcare in a Land Called PeoplePower: Nothing About Me Without Me.” I wrote about it on my personal blog last month. The paper is a phenomenal, prescient description of what we’re now calling participatory medicine, except way more pervasive throughout society.
Venue: The location is Schloss Leopoldskron, the 18th century palace of Prince Leopold. It’s the palace where Sound of Music was filmed. I’m there now – it’s beautiful, and I hear there are mountains nearby, if the fog ever clears. (Ahem.)
This event is titled “The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care.” As my post says,
The first phrase alludes to an expression made famous by Charlie Safran MD, of Beth Israel Deaconess, when he testified in 2004 to the House Ways & Means Committee’s subcommittee on health: “the most under-utilized resource in our information systems – the patient.” I recently learned it was first said years earlier by his colleague Warner Slack MD. Both of them were early mentors to Dr. Danny Sands, my primary physician.
Bluntly, these guys have been working for decades on empowering and enabling patients to be engaged in their care, and it’s a thrill to be connecting with them and moving the ball forward.
The event is organized by FIMDM, about whom I wrote in September, saying “You can’t be well empowered if you hear advice wrong. That’s why, in a participatory relationship, an essential skill is accurate handoff of information.”
This is one of the great big challenges in informed decision-making: If you tell someone something, and they hear it differently, what’s been accomplished? This messes up interpersonal conversations all the time (don’t tell me you don’t know some crazy people), and when it’s a matter of healthcare, the consequences are important.
FIMDM may be the least-known important source of healthcare improvement work. They’ve been doing all kinds of good things for years, almost in “stealth mode,” as we’d call it in high tech: hardly anyone’s heard of them. They’ve been involved in developing patient training/decision aids to help with decision making, and they sponsor Gary Schwitzer’s Health News Review, which we’ve written about numerous times.
Faculty
The seminar’s faculty includes some names I know, and a lot I don’t. This is where I get embarrassed, so I’ll just list the ones I know:
Jack Wennberg of Dartmouth (Wikipedia), one of the pioneering thinkers who first pointed out “practice variation” – the reality that although we think our doctors are all driven by science, there are wide variations in how often things are prescribed. His new book is Tracking Medicine.
Gary Schwitzer (@GarySchwitzer), cited above, of Health News Review (@HealthNewsRevu).
Gerd Gigerenzer, lead author of a terrific e-patient training article on making sense of health statistics. Here’s our post about it from two years ago.
Susan Edgman-Levitan of the Stoeckle Center for Primary Care Innovation at Mass General.
Among participants, I’ve already met Greek Twitter friend (and member of the Society for Participatory Medicine) Kathi Apostolidis (@KGApo and @eHealthGr).
Hairy, complicated issues.
Until I started doing the pre-reading (see the whole list at bottom), I had no idea about these issues:
- A lot of work has already been done in shared decision-making (“SDM”). (To listen to us bloggers and most patient advocates, you’d think SDM is nothing but a glimmer in dreamers’ eyes. E-Patients need to spread the word and train each other about this!)
- It’s a hairy subject. If you believe (as I do) that patients have a right to know what their options are, including the pros and cons, you quickly bump into questions:
- Who gets to say what the pros and cons are? The AMA might have one opinion, but another medical association might feel differently, and patient communities might have another (or several).
- How do you convey the pros and cons to everyone at every level of geekiness, and every level of access to technology? I had breakfast today with people from the Philippines and China, whose constituents don’t all have access to resources we take for granted; many don’t even have fundamental education.
- If you develop good patient education materials, how do you finance keeping them updated? There’s always new news – that’s where Health News Review comes in: it’s really important that we keep training our science journalists on good critical thinking.
This is real feet-on-the-street work, getting serious about patient participation.
Help me represent you.
Do you have a story about sharing (or not sharing) in a medical decision? Please share it in a comment on this post, so everyone at the seminar can see it. Or email it to me – dave at epatientdave dot com.
My thanks to:
– Rob Kolodner MD, who until David Blumenthal came along was the US National Coordinator for Health IT. Rob’s big on patient-centered open source software, and he tipped me off to this event. Rob and I were introduced by awesome DC friend Cindy Throop (@CindyThroop.)
– FIMDM for sponsoring my participation with a scholarship.
– A generous donor, Douglas Drane, for travel funds. Among his many achievements in life, he’s the father of TEDMED speaker Alexandra Drane, founder of the Engage With Grace movement.
As always with patients, it’s still costing me (and Kathi) 10-14 days of unpaid time, but we’re all working on changing that: how can policies be truly patient-oriented if ordinary patients have to pay to participate?
you’ll like this short video which ends attributing the quote to Dr Ross Fletcher
“the patient is the first member of the medical team”
http://en.basilstrategies.com/basil-tv-2-0/communicate-cham-2/
Denise
I certainly agree – first member of the team is a big issue, consistent with the aphorism “Physicians are coaches – patients are players” we quoted here, from Dr. Stanley Feld.
And, I think that’s a separate issue from whether or not the team member is utilized – oui?
I said that when a patient participates in a decision, it cannot be less good than when he/she does not participate. Dave asked me to define “good”. Here goes. I don’t see how a medical decision can be good when the physician does not know the goals, concerns of the patient or overrides the patient with no dialogue, to take two scenarios. So, to me, a good decision is when the medical option chosen has been informed by patient’s concerns, goals, knowledge, etc. I agree that there is the issue of the patient opinion evolving…for example in regard to risktaking…What I’m truly espousing here is the necessity to take into account the patient’s goals and opinions, something that should be obvious, but is not.
Denise,
> to me, a good decision is when the medical option chosen
> has been informed by patient’s concerns, goals, knowledge, etc
So far (3 hours into this seminar) your definition seems to match that of FIMDM, the leaders.
Hey, Dave!
Problems developed because I was or wasn’t involved in a decision? Gawd, where do I start? I haven’t been an e-patient long, at least in comparison to how long I wasn’t, so mine are mostly from not being part of the decision making process.
I’d say the worst was probably when I allowed a physician to write prescriptions for me without becoming familar with the medications. I was struggling for diagnoses (I have FM, CMP, OA, and DDD). He wrote for Flexril (muscle relaxer) and pain meds. He started with Vicoden, then Percocet, then Oxycontin, and finally Dilaudid.
When I had to use a pharmacy different than my regular one after one of my appointments, the pharmacist called me back to the counter to tell me that my physician had me on twice the max dosage of Flexeril (30mg ER caps), and far too much Dilaudid, where it was apparently causing my body to produce pain in order for me to need to give it more. The way he put it was that, not only should I not be feeling any pain, but I shouldn’t have been able to stand up.
I knew I’d been tired and groggy but that’s normal with pain pills, right?
After going through withdrawals as I taperedoff (outpatient, too-gotta love that Medicare), I had so little pain I didn’t need narcotics at all, just Ibuprofen, and the weekend after I was completely off the narcotics, two friends took me camping and I chopped most of the firewood with just good ol’ aches from doing hard work.
(Compare to years later when I was prescribed Savella, checked it out in my Nurse’s Spectrum Pill Book and refused to take it because it’s an SNRI and I was already on two, and didn’t want to lose the balance I’d found with my Bipolar Disorder.)
Yep, I’ve learned a thing or two, and my current PCP suggests a treatment and asks if I’d like to try it.
Annie
So, Annie, so far you haven’t given me anything that could be fodder for the discussions here. At least not explicitly.
In hindsight are there things you wish you’d been told, or questions you wish you’d asked?
Dave,
One thing I don’t hear talked about is that part of the solution to dialoguing isn’t just about how good the technology is and how easy the tools are to use, but also about attitudes that are societal and generational. Maybe it’s even different for the different genders (i.e., men don’t complain about pain because they’re macho but women complain too easily). Attitude’s also been a part of the medical community’s culture: clinicians seeing themselves as “orderers” because of their level of education.
I guess that’s my awkward way of saying that I hear a lot about tech and dialoguing, but not much about the psychological hurdles. Unless, of course, that’s what’s going on there now.
As far as things I wish I’d been told or I’d asked in this situation? I guess my physician expected me to be told medication info elsewhere (pharmacist? printouts that come with the Rx’s?) instead of telling me himself what to watch out for as far as dependency v. addiction. The loss of cognitive abilities crept up on me in such a way that I couldn’t have asked anything once I began to go all foggy.
Annie
That’s a good point, Annie, that a weakened patient or weakened mind is less able to realize what’s going on or speak up. That brings us back to “patient is a collective noun” or the importance of patient advocates, e.g. Trisha Torrey’s AdvoConnection.
One participant here is
Richard JohnstonRobert Johnstone, who’s had rheumatoid arthritis since he was three. He’s basically a fifty-year e-patient; he founded and is president of the International Alliance of Patients’ Organizations, IAPO. Twitter friend Kathi Apostolidis (@KGApo) is here; she’s a long-time fan of IAPO, so it was fun for her to meet him. (She’s beaten cancer twice, and is a passionate patient advocate in her after-hours life.)Yes, the issue of some docs seeing themselves as non-participatory “orderers” is part of the discussion here. In its 21 years (mostly anonymous), FIMDM has done some pretty deep research into the causes of practice variation, and that’s one cause. And as Denise’s tweet tonight said, FIMDM founder Jack Wennberg’s Dartmouth Atlas was the first to show that the probability of various surgeries depends on where the patient lives.
As I understand it, that discovery was the birth of the Evidence Based Medicine movement (EBM), which today is quite strong in most areas of US medicine, if I understand correctly. (Notice I didn’t say everywhere.)
The pre-reading we were assigned (over 200 pages) is here. In your spare time you might want to plow through. (I hope that link will work for you.)
Here’s the Twitter stream for the seminar’s hashtag, #SGShealth
Hi Dave,
I am not aware if you knew that Transparent Health just released the training documentary The Faces of Medical Error: From Tears to Transparency “The Story of Michael Skolnik.” It is the second film in this internationally acclaimed series that shares with viewer how open, honest conversations about the risks, benefits and alternatives to a procedure can indeed change an outcome or save a life.
Through this story told by Michael’s parents along with commentary from health care experts, one learns how moving from INFORMED CONSENT as an event to SHARED DECISION-MAKING as a process will improve outcomes and reduce risk to institutions. We paid the ultimate price of losing our only child because of the conversation we didn’t have. I only wish I were there to speak on behalf of this topic.
Anyone that sees this film from nurse, doctor, hospital leader to patient will never have the same conversation they had in the past. Patients will receive the care they need, no more and no less.It challenges the medical community to put the patient in the middle of medical decisons and ensure that they possess the power to decide the proper path and are equipped with the information they need to make that decison.
Plese call on me for anything… anyone might need on this crucial topic…Can a conversion change an outcome…
Sorry we didn’t get a chance to spend time at IHI.I am off tomorrow to speak Senior Radiologist Residents from 4 hospitals tomorrow just on this very thing. Safe travels .
Patty Skolnik, Michael’s mom
Hi Patty – thanks – I think all of us who were there at the IHI patient summit wish we’d had 8x as much time together. That shows how needed the event was. We all knew that, but I guess it took the IHI to finally make it happen for the first time.
(For readers who don’t know, last week the Institute for Healthcare Improvement, supported by the Cautious Patient Foundation and other sponsors, paid the expenses to bring 50+ patients & advocates together to attend the entire IHI Forum plus a special patient advocate summit the day before. It was emotional at times and I suspect it kindled a lot of upcoming activity.)
Can you give me a link to the details of your son’s story, showing how the process of shared decision making didn’t happen? (I understand the difference but I don’t know your specifics.)
Dave go to You Tube and you can see the trailer of the Michael Skolnik Story…you can get a good feel from that. Michael had unnecessary brain surgery by a doctor that was not qualified. The film covers the first 5 months Michael was in ICU. He suffered for another 27 months 21 of them in hospitals before we did not put him back on life supports. All could have been prevented by open, honest communication. If you go to our website http://www.citizensforpatientsafety.org
you can see the story and the legislation we have done for transparency. 32 months is a long time to put in an elevator speech but worth knowing about…Michael was 22 an EMT and studying to become a nurse. He loved the medical field. His father and I promised him we would leave the medical industry better then we found it. We believe we continue to work with patients and providers to fulfill this promise.
Warmly,
Patty
Just to close the loop, Patty – I confirmed that FIMDM is in touch with Rosemary Gibson about your film.
For those who haven’t seen it, the trailer of the Skolniks’ film is here. Painful, indeed. :–(
Dave,
the fact that you do not know certain participants in this event can probably help explain why you still try to stir the definition of participatory medicine with a focus on the doctor-patient relationship, and away from the central significance of patient autonomy, over the beneficence of health professionals, helping patients with information.
That definition, “Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners”, if you remember, puts the patients at the center of the decision process, without making explicit references to a need to have direct interactions with health professionals to make some of these decisions.
The co-chair of your meeting, the amazing Angela Coulter, formerly CEO of the Picker Institute, wrote the seminal “The Autonomous Patient – Ending Paternalism in Medical Care” which became Tom Ferguson favorite book while he was preparing the e-patients white paper. I highly recommend you get a copy of read it, since it remains a remarkable monograph and is the basis of chapter 7 of the e-patients white paper, The Autonomous Patient and the Reconfiguration of Medical Knowledge. It is in part due to this short book that we decided, around 2003, that in this new world it is fundamental to keep the “participatory” aspect (although we had not yet named it) of the modern, networked patient separated from the established meaning of shared decision making or doctor-patient relationship.
Here is a sample of what Angela Coulter wrote:
“In the 21 st century the patient should be a decision-maker, care manager and co-producer of health, an evaluator, a potential change agent, a taxpayer and an active citizen whose
voice must be heard by decision-makers[….]
Much more fundamental change is required in the way in which patients and professionals interact. Managers and clinicians will have to be prepared to cede some power and patients must be willing to take greater responsibility for their own health.
These changes are necessary to ensure the sustainability of collective health care provision. Discharging the obligation to respect patients’ autonomy requires equipping them to overcome their sense of dependence and achieve as much control as possible as they desire.
The clinician has an obligation to build up or maintain the patient’s capacity for autonomous choice, to disclose information, to probe for and ensure understanding and voluntariness, and to foster adequate decision making.
The changes that are needed are more than cosmetic. What is required is a change in the way clinicians and patients think about their roles, in other words a culture change.
Patients’ rights to make autonomous decisions need to be better under stood, encouraged and supported. This is necessary to restore confidence in the system, to facilitate appropriate treatment choices, to manage care effectively, to ensure patient safety, to raise quality standards and to promote accountability.
The patient needs to be seen as an active participant and the clinician as a facilitator. They should be equal partners in the process of dealing with illness. Old habits which promote dependence and passivity in patients must be cast aside, along with the paternalistic attitudes which underpin these behaviours. Clinicians will need to develop expertise in information retrieval, preference elicitation, interpretation of evidence and risk, and education for self-reliance, alongside their more traditional clinical skills.
Doctors and their patients must be persuaded to acknowledge the limits of medical care. ”
You can find more here
Hi Gilles – good catch. We had several of Angela’s writings as homework, but I didn’t connect her (familiar) name with the white paper – she’s prominent in my own chapter summary for chapter 7.
You might be interested in her latest, in the BMJ last month: Do patients want a choice, and does it work?
I guess I don’t see a big difference between the patient becoming autonomous and that representing a shift in the doctor-patient relationship. I know you’ve said patients in the end don’t need doctors so much, but I look at my own case: I didn’t know I was sick, I never could have diagnosed myself, I certainly couldn’t have invented HD-IL2 nor done surgery on my kidney or my leg.
So although as Tom’s triangle slides represent, the vast majority of care is self-care, I don’t see an end to doctors. And that leaves us with a relationship, which is shifting, yes?
And of course I completely agree that doctors should advise, not pre-decide and direct. I myself have declined treatments that doctors have recommended, just as I’ve declined advice from financial advisors and car mechanics.
And I suppose that does make me an autonomous patient by your standards, yes? I ask advice, and I decide what advice to take?
No one is talking about self-diagnosing cancer :-)
But that’s the only half-joke I can make here.
Dave, I think you often make a real disservice to the very large number of patients who, unlike you, do not have direct access to a great team of doctors and other health professionals dealing with their disease. Until you acknowledge the incredible amount of luck you benefited from simply by having Danny as your PCP, you won’t be able represent the majority of patients who are often really left in the dark. Your experience is unlike anything they will go through, just because most doctors still believe in the fallacy of the unlimited beneficence of the medical profession.
Just as a small example, over the last 13 years I have witnessed countless times, in the kidney cancer community, people joining the group, only to learn that their doctor, sometimes in very famous medical institutions, had not mentioned the existence of IL-2, the only treatment that can put a stage IV kidney cancer patient in long trem remission. That is not shared decision making! And that’s just the start. From that moment the relationship with the doctor cannot be built on trust and a large group of other patients becomes the de-facto main source of validated information.
Failed connections with doctors, tremendous bias, obvious lack of trust and many other problems are the normal lot for many educated patients. It is a painful reality that must remain at the center of any conference designed to improve patient outcomes. Accepting this profound and pervasive dysfunction is a necessity before you can operate real changes. Anything else will just help keep most of the status quo alive and many patients will still receive sub-optimal care, even in the geographic markets deemed superior in the Dartmouth Atlas.
Hey, Gilles!
I have some questions related to the following:
Do you consider this a “bad” thing? Not the loss of trust with the doctor part, but that primary sources of information are, in some cases, other than the doctor? Don’t patients have a responsibility, to the best of their ability and within the limits of their resources, to learn whatever they can about their condition?
I know that, in my case, gathering as much info as possible led me to understanding about co-conditions not mentioned by my doctors at all, and “alternative” treatments, some of which have done more good than anything my doctors offered.
It takes two people to have a discussion, and I feel if it’s to be improved, both participants need to put everything they can into it.
Annie
From Facebook:
Doug wrote: In the mean time, there is a tool for patients who wish to be actively involved with their physicians in Evidence Based Treatment Decision Guidelines. The first is the National Guideline Clearinghouse at: http://www.guidelines.gov/
The other is Curehunter which is a Real-Time Evidence Based Clinical Decision Support Tool. It’s at: http://www.curehunter.com/public/showTopPage.do
Patty Skolnik added: “forgot to tell you to go to You Tube search Transparent Health and see the Michael Skolnik Trailer.”
Thanks to everyone for their participation!
Dave, Thank you for the opportunity to participate. We will be well represented!
My oncologist was definitely a coach when had to decide on a course of treatment for ductal carcinoma in situ, a stage 0 breast cancer. My first oncology consult was a “Wham/bam/you need a mastectomy ma’am” who shot down every alternative/question I raised. Clinically correct perhaps but emotionally tone-deaf. We’re talking, “Well, you could try that but I don’t think it will do you any good because you have a diseased breast.” I see. Can I at least have dinner and a drink first?
My second consult, who became my oncologist, told me I had options although he asked me to keep an open mind. And darned if he didn’t also recommend a mastectomy, although he told me he’d support me if I opted for radiation and surveillance. He was mindful there’s a person attached to the breast. While it’s a lonely choice, it has to be our choice. After weighing the risks, I opted for the mastectomy and have no regrets. I will always remember how he respected both my intelligence and my emotions.
Jackie Fox
Author, “From Zero to Mastectomy: What I Learned And You Need to Know About Stage 0 Breast Cancer”
Great example, Jackie! That’s a quotable one for sure.
In addition to the options, were you taught about the risks of each option, both during the procedure and after?
Hi Dave,
Yes, my general surgeon and I had discussed radiation risks while I still assumed I was on that path. With my oncologist and family doctor, our discussion of risk centered on the risk of whether my DCIS would become invasive (given my specific circumstances and risk factors, it appeared to be 50/50), and which treatment posed the best option to ensure we didn’t leave any renegade cells behind. We didn’t discuss risks specific to having a mastectomy and I didn’t feel any lack there. Afterward I was educated on general risks as you would be with any surgery–what to watch for in signs of infection, for example. My general surgeon and I did discuss lymphedema but primarily for him to explain why that wouldn’t be an issue for me. My doctors were great about communicating their concerns and explaining how things work. I’d never had any kind of surgery or major diagnosis so it was pretty interesting.
Hi Dave,
Thank you for all your work and the opportunity to fully engage in a global (important) conversation. SOmething I hope more moms take advantagee of ( I have passed your request on to other parents of ill children).
That is also what I see missing in this dialogue – pediatric and neonatal patients. How can they be engaged as participatory patients in their care? Obviously for most the answer is through their parents. Some are old enough to communicate wishes. Where do you place the judges and lawyers that are called in to either deny or allow a minor patient’s wishes in their treatment? It is not an easy quick answer. Certainly one that could be discussed in light of events globally over the past couple of years – including the young girl in England who did not want a heart transplant and was left to deal with judges and courts.
My story – rather, my son’s story – we were never told of the options available to him.
In the 2001 timeframe there were a couple courses of treatmemt that were considered standards for his cndition (coarrctation of the aorta). Instead of giving us the list of possible treatments and what the provider considered most affective; the clinician went ahead and performed the most invasive and aggressive treatment (also the most expensive) without our knowledge or consent.
My son died as a result – but not until after he endured a lifetime of additional procedures and HAIsetc as a a result of the clinicians decisions. That poor communication post adverse events were a result of the lack of true informed consent. HOw could I trust them again when they never told me they would perform open heart on my son? Things went from bad to worse.
TRial and verdict were additional nightmares. It took a very long time, and regaining of my own inner strength; but finally a conversation was had between me and one of the docs. A great deal of healing happened in our conversation. Just to think how much pain and loss (on part of both of us and many others) would have been saved if the communication between patient/family and clinicians had been as open BEFORE anyone touched a scalpel….
When there are options the clinicians would do well to list the options, state their preferred opinion and let the family feel they were a part of the decision.
Warm regards and best of luck in your work,
Mary Ellen
Just wanted to say that I too have stayed at the lovely Schloss Leopolsdskron for the Saltzberg Seminars, and loved the place as much as it seem you do! When the fog clears it is gorgeous! Make sure to visit the farmer’s market and the Christmas markets!
We are developing a web-based tool for shared decision making around mammography, and have found that indeed there is much work already done in this arena to inform our efforts.
Look forward to hearing more about your trip.
You asked for stories about participating (or not) in medical decision-making. Here is our family’s story about participation in resolving the over-medication of my mother-in-law. Please go to Healthy Skepticism’s website and read “Our Mom’s Story”:
http://www.healthyskepticism.org/global/news/int/hsin2010-06
Seminar participant Tessa Richards (Twitter @TessaJLRichards) is an editor at the British Medical Journal, and asked several participants to write short posts for the BMJ blog. They’re here.