Jessie Gruman’s Journal of Participatory Medicine commentary, “Evidence That Engagement Does Make a Difference,” reminded me of a talk delivered by Alice Tolbert Coombs, M.D., last September:
As you listen to Dr. Coombs’s chilling story about a man who lost his foot because nobody ever took his sock off to examine it, please review Jessie’s summary of the JAMA study, “Factors Associated With Decisions to Undergo Surgery Among Patients With Newly Diagnosed Early-Stage Lung Cancer“:
— snip —
This study illustrates four critical points about people’s engagement in their health care:
First, access is only the first step in making use of care. More than 90% of the people in this study had access to appropriate and effective life-extending surgery, yet other factors — some personal and some related to their interactions with health care providers — led fully one third of them to make another choice.
Second, communication is critical. While age and other personal characteristics affected some people’s decisions of whether or not to have the surgery, their choices were powerfully affected by the style and content of communication with their doctor, and by the presence or absence of a relationship with a regular provider.
Third, racial disparities matter. The opportunity to participate fully in one’s care is influenced by race. African Americans are less likely to have a familiar, trusted primary care provider who can help a distraught patient with newly diagnosed lung cancer confirm her diagnosis, understand her prognosis and then weigh the trade-offs of surgery. Further, it has been confirmed elsewhere that physicians are less likely to recommend aggressive procedures to African Americans than to whites.
Finally, individual choice may outweigh evidence. It is important to note that even some who have been counseled thoughtfully by their surgeons and primary care providers about the risks and benefits of this effective surgical intervention decide to forgo it. There are many reasons to do so: Fear of surgery, discouragement and depression, religious beliefs, lack of family support…the list goes on.
— snip —
Online engagement is the focus of my research, so a letter to the BMJ from Paul Wicks of PatientsLikeMe also comes to mind: “Sharing access might increase engagement.” An excerpt:
— snip —
All our data are patient reported, and this has advantages and disadvantages. In its favour, creating patient reported outcomes and disease specific tools demonstrates value to patients in their first contact with the system. There is no need to interface with a multitude of IT systems, negotiate variable policies and permissions, or adhere to US regulations for protecting health specific data. Disadvantages include uncertainty over quality of diagnosis, uneven levels of participation, and less ability to capture objective values (for example, service use).
Patients may expect greater levels of connectivity as a result of social sharing tools, such as Facebook; users of PatientsLikeMe identify several benefits of sharing their health data with others.
— snip —
Skeptics may well ask, Who is ready for this? The sickest people, the ones most at risk for being left out of the clinical conversation, are the least likely to have access to the internet. Pew Internet research shows that is the case — for now — but the spread of broadband and mobile internet access is changing people’s attitudes toward information. As I wrote recently:
The always-on, always-with-you internet enhances people’s online experience and creates a positive feedback loop, reinforcing their interest in using the internet to gather and share information. Two waves are crashing together – an increase in technology and an increase in chronic disease – and both are driving us forward toward engagement in online health resources.
I’m working this holiday week (shh, don’t tell anyone) on a couple of new reports which show that yes, there is a segment of the population using the internet to track their weight, diet, exercise, and other health indicators or symptoms online. And yes, another segment goes online to find other who might have health concerns similar to theirs. They are small groups, but they exist.
To bring it back to the beginning, I’ll just ask: What’s it going to take to get the sock off? A thorough clinician? An insistent loved one? Or a realization inspired by something someone sees online?
From Dr. Coombs –
> a black male in Mississippi is 5.3x more likely
> to have an amputation than in Massachusetts
The Dartmouth Atlas she cites is what I was talking about in last week’s practice variation post. As that concept has sunk in, it’s become downright scary to me.
> That means some people are a little bit more aggressive
> at limb salvage surgery
*So* important. At the Salzburg Seminar I heard a tale of a diabetic patient who asked at length if there wasn’t some alternative to amputation, and was told no. They then amputated the wrong leg – and THEN decided to actually fix the affected leg, which supposedly had to be amputated.
Increasingly I think of my friend Elyse Chapman, whose U of Iowa surgeons told her she absolutely needed a hysterectomy for her pain. She wanted to believe them but had to work out the logistics (widow with young kid, would be out of work for weeks), so she got engaged in her care, did research, found a surgeon who could do it less invasively, and ultimately learned she didn’t need surgery at all. She didn’t have it, and is fine today. (Her “An e-patient is born” post is here.)
When Elyse kept coming back to her docs with questions, they eventually stopped returning her calls.
My answer to your “What’s it gonna take?” is, the culture change might take forever, and meanwhile we-all need to SPEAK UP and insist that we be taken care of, our socks be taken off, etc. Watch out and be sure we’re being listened to and heard.
My father(David Bynum)did not have to be another black health care statics. He was a great father, and I love and miss him very much. Dr. Alice Coombs did not present all the facts in my father’s (David Bynum)”Take Off The Sock”, “A Sock, A Clown’s Story and Other Tales of Health and Care “They never took his sock off”: a parable of patient empowerment, resourcefulness, and literacy stories. She also mentioned him in her President of Massachusetts Medical Society Acceptance Speech. As his oldest child and a 1999 victim of medical errors, I must share our story. Unfortunately, my father passed on January 15, 2011 from his illness. My father was empowered by one of the best because Dr. Coombs was his health advocate and sister-in-law for many years. He was a 74 year old elderly man suffering from a stroke. My father was an educated successful entrepreneur with an educated family support health care team in New York and Massachusetts. It was very difficult for me to advocate for him because he respected Dr. Coombs position and expertise as a doctor. Therefore, as Founder/President of ATWINDS Foundation, Inc. and Medical Record Awareness, I will continue my mission to raise awareness to help others in his memory. I am joining fores with Regina Holliday’s “Walking Gallery” on June 7, 2011 at Kaiser Permanente Center for Total Health to raise awareness on the issue of Medical Records. Our health story will be painted on the back of the jacket that I will be wearing. I thank God that for allowing me the opportunity to help advocate with Regina on the issue of Medical Records. More updates coming soon! For more information visit http://www.atwindsfoundation.org and check out the two Senate Maryland Resolutions that my father David Bynum and ATWINDS received.
Eunita Harper Winkey
I’m a little frustrated by not having Dr. Coombs’ slides mixed in. Do you know if they’re online somewhere?
We are at the mercy of the Mayo Transform camera-workers, who cut to the slides at times. I’ll send a note to David Rosenman, the symposium organizer, in case he can connect us to Dr. Coombs (or simply to her slides).
Wow, I didn’t realize how MUCH is in that 19 minute video. Far more about disparities than I imagined, given the words you put in this post.
I also like how she applied Forrester’s empowerment model to patienthood.
And of course I love her final words:
“We know that the best outcomes come when both sides of the equation – the providers, the patients – work together.”
I’m so glad you’re watching it – yes, it’s a meaty presentation that I couldn’t possibly capture in a short post.
I am convinced that engagement can make a HUGE difference, including in many cases the difference between life and death.
But before one speaks of engagement one must have some level of trust in the system. And as we learned a few years ago during the 1-day conference at UNC Chapel Hill, School of Public Health, the main issue with African Americans is the utter lack of trust on the medical system, in general and totality. So, it seems pretty obvious that the level of engagement of the African American patient population with health professionals members of the healthcare system is going to be significantly less than with the Caucasian population, as long as African Americans lack trust in the system that is supposed to get them better or at least help them deal with medical conditions in an optimal way.
It is certainly not by chance that the amazing underrepresentation of African Americans at every conference dealing with Health 2.0, patient engagement and Health IT, is so blatant!
I almost forgot I wrote about the lack of representation in 2009:
Health 2.0 / Ix Conference: What About Minority Representation?
There is much to discuss when it comes to disparities. I’ll add some internet access data to the mix:
77% of white adults in the U.S. go online, compared with 66% of African American adults and 62% of Latino adults (based on a September 2010 survey conducted in both Spanish and English, calling a mix of landlines and cell phones)
When we include wireless access in our definition of an internet user, however, the differences between white and African American adults disappear.
Regarding health information: 82% of white internet users gather health info online, compared with 71% of African American internet users and 73% of Latino internet users.
I’m not seeing significant differences among these groups when it comes to interest in health topics. I’ll be diving into some deeper analysis in January regarding sources of health info (professionals vs. peers) and will be very interested to see if there are racial/ethnic differences on that score.
It’s depressing to listen to Dr. Coomb’s detail such bad care. There is simply no excuse for failing to examine the foot of a diabetic who comes to a medical facility complaining of foot pain, no matter the state of patient empowerment! Yes, it is really too bad that the diabetic patient apparently didn’t understand the importance of foot care, and any decent care system would have done all it could to educate (empower) him and make sure he understood what to watch out for. But the fact remains: he sought care, and what he got was not only neglect but harm. Ditto for the other cases. The care (non)givers in these cases need to be educated, warned, and in some cases disciplined. Everyone — patients, clinicians, and administrators — need to be clear that this kind of bad care will simply not be tolerated. The way to improve the system is to make sure that there is feedback for every encounter from the patients and colleagues. It is a shame that in these cases word of the screw-ups came around too late to be helpful. Hopefully there has been some effort to make sure that these practitioners aren’t still making the same mistakes.
It is a shocking story and I agree, I’d like to know what has happened because of it. If I’m able to get in touch with Dr. Coombs, I’ll ask for an update.
Dr. Alice Coombs did not present all the facts in my father’s sock story. My father was empowered by one of the best because Dr. Coombs was his health advocate and sister-in-law. He was a 74 year old man also suffering from a stroke. He was a successful educated entrepreneur with an educated family support health team. We both have been victims of medical errors. Therefore, as Founder of ATWINDS Foundation and Medical Record Awareness, I will continue the mission to raise awareness.
The only issue isn’t the lack of trust, when someone is sick and illing and have crazy abdominal pains, he/she has no other choice but to trust the physician, so in those times the trust has to be there. If you listen to Dr. Coombs, the physician made assumptions (maybe bc newbie doc learned that gout has a higher prevalence in the African American). Why didn’t the doctor take his sock off?
Why are people of color given subpar care? And it’s not because there isn’t empowerment among communities of color– in this country, people of color have a rich history of empowerment.
I’ve had a conversation with Gilles w/ regards to the disparity in the health 2.0/online communities and what I took away from our conversation was the engagement. Yes, we gotta make 3.0 connections w/ communities of color. But in the formulation of the online communities and other web sharing enclaves, it seems that we gotta reach out and include.
I’ve seen and experienced all too often the case where I (and I like to think of myself as health literate) will question and engaged the doctor only to be dismissed like I don’t know what I am talking about. It bothers me that I can’t trust doctors to give my parents the proper care and I have to get on the phone to explain and ask why such and such is getting done. But that’s just my experience, which is not incidental — it is systemic.
Lucky for me, I found y’all, so I know I am not acting like the crazy one.
But thanks for writing and engaging me this conversation. Check out tweetchats of #healthjustice (ran by @healthjusticeCT), which just featured @mindofandre (I missed that one, boo!) on health disparities of men of color. Another great tweeter is @healthinequity.
Two great films to check out:
Angry Heart is another great film.
Myrna, it’s not *only* non-whites who are given subpar care. Elizabeth Cohen’s book, and others such as (I think) Trisha Torrey’s, document at some length that it happens to women, seriously obese people, and other categories. It boils down to “If you’re not a reasonably good looking white guy, watch out.”
Cohen cites one study where trained actors/actresses were taught to present exactly the same knee symptoms to clinicians. The males were much more likely to have the established standard of care prescribed.
But, I’ve often heard cited (from Medicare data?) that fewer than half of *all* patients receive the standard of care. How amazing is that? Smart people have been working on that for years.
Hmm, so that has me again thinking it’s prudent for us all to be able to *look up* the standard of care.
Won’t it be ironic if *we* end up being the stewards of quality control in healthcare? After all the guff we’ve been given by those lesser docs who say “Look, who’s got the medical degree here?”
Well, power to the people, as we’ve been saying.
Dah-veed, Amen to that one! It’s funny cuz I read an article with the similar view, but stated that patients are biased towards the race of the doctors. Yep, as you say “if you a reasonably good looking white guy…”
While I appreciate and understand your point that disparities and subpar care doesn’t extend to solely communities of color, I can only speak from what I know and my experience. Although there’s lots of data and studies (peep out CBPR – community based participatory research)to suggest that my experience is not unique. I will never deny that disparity exists among women and the obese and the sick (because such folk exists in communities of color), but really check out the movie the deadliest disease — one of the major focus of the film is a black woman who intersects all those dynamics.
As Buddha says, “Every human being is the author of his own health or disease.”
Myrna, I’d love to see those studies (where subjects rated white men higher) repeated in an Asian country.
I’m wondering if it’s a self-sustaining thing, where white guys are currently most-valued in the society so their attention is *perceived* as most valuable, even among people who’d prefer that it not be that way.
Like, “Oo, my doctor emailed me – that’s unusual and valued” might only apply to white guys, because others are already seen as more sociable …?
All speculation, of course. I’m just hypothesizing, thinking about what might be under the surface.
In any case it still comes down to “Do yo’ damn job!”
I posted that comment too soon. My point was that if the driving force is the perceived value of the culturally dominant trait (“white guys”), then the effect should migrate in a different culture. Where the attention of Asian men is most valued, the effect should be attached to them; in a culture where elder women are most valued it should accrue to them; etc.
Thanks for sharing this important video. Dr. Coombs is right, that patients can do a lot more to help themselves get better care.
But I don’t see the first story, of a diabetic patient with foot pain, as a failure of patient engagement or communication. It’s about the consequences of physicians and other caregivers not examining their patient.
IMHO, I think the first story is about not engaging the patient. Not examining a patient after they tell you his toe is hurting means that doc is going on what the doc knows and not what the patient is telling him.
Yes, I agree that the first story is a pretty classic #fail on the part of every health professional who saw this man. As Myrna writes: Engagement has to go both ways.
> Engagement has to go both ways
Ironically, that echos our May post Putting the compliance shoe on the clinician’s foot.
I’m starting to think that much of this great mystery boils down to “Medical science only works if you frickin’ do it.”
Dr. Alice Coombs did not present all the facts in my father’s “They Never Took of the Sock” story. He was empowered by one of the best because Dr. Alice Coombs was his health advocate and sister-in-law. My father was a 74 year old diabetic also suffering from a stroke. He was an educated successful entrepreneur with an educated family support health team. We both have been victims of medical errors. Therefore, as Founder/President of ATWINDS Foundation, Inc. and Medical Record Awareness, I will continue the mission to raise awareness on the issue.
Thank you so much for taking the time to post your perspective! I was very sorry to hear of your loss and your own story.
Thank you for your sympathy. Not being allowed to advocate for my father’s health is heart breaking. Therefore, I will be the voice to advocate for others in his memory. In memory of my father’s death the Senate of Maryland sent their condolences in a Senate Maryland Resolution. ATWINDS also received a Senate Maryland Resolution in recognition of our dedication to helping others, mentoring children, strengthening communities and serving many through such programs as the Katrina Project and the Medical Record Awareness program. I will continue the mission to raise awareness on the medical records. For more information visit please http://www.atwindsfoundation.org.
Eunita Harper Winkey, Founder/President
ATWINDS Foundation, Inc.
Thank you for posting your story and your website. Yes, you are absolutely right, a teacher is work is never done. It is important to hear your perspective as at the bottom of disparities is structural racism. It is a pathology that has sickened and continues to sicken people. Organizations such as yours that value direct service and relationship, aspects that are difficult to quantify and measure, is invaluable to ensuring quality care.
IN LOVING MEMORY OF DAVID BYNUM (Father)
BROOKLYN, NEW YORK
“Take Off The Sock”
(DECEMBER 22, 1936-JANUARY 15, 2011)
The article link states that “New England Sinai hospital, which traces its roots back to 1927, opened as a nonprofit health care provider for patients who could not pay. It managed to do so for many decades, but the financial losses of recent years were a sign of changing times. ” I don’t know the history of the hospital other than what I have learned from the Internet after my father David Bynum’s death on January 15, 2011. David Bynum’s sister-In-law and health care advocate for many years Dr. Alice Coombs, the former 2010-2011 President of Massachusetts Medical Society referred him to New England Sinai hospital. David Bynum was a wealthy businessman so he could not have contributed to the financial losses as a patient who could not pay. Read More!
http://bostonglobe.com/business/2011/12/09/new-hospital-battleground/UngnwqWE9rHLjZn7p5icEK/story.html [Subscription required]
In a September 2010 speech at the Mayo Clinic, Dr. Coombs shares her brother-in- law David Bynum’s chilling story by the name of Patient B.
A Man’s Sock
“The first indelible image offered to 500 plus attendees was projected over a vast stage by the speaker, Dr. Alice Tolbert Coombs, the president of the Massachusetts Medical Society. It was a photograph of a man’s enormously swollen left toe, oozing pus and colored in angry red and blue hues. Seeking relief, Dr. Coombs explained, the man who owned this toe had gone to see a doctor and several other health care workers. Each had listened to the man and then prescribed different remedies, not a single one of which was appropriate to his actual condition – diabetic gangrene. The simple reason why all these health care professionals missed easy diagnosis: none of them had bothered to remove the man’s sock. Common sense could answer a lot of health care questions, Coombs suggested. That and education, on the patient’s part especially.”
My father David Bynum was a successful entrepreneur from Brooklyn, New York, and he would have been 75 years old today. According to Dr. Coombs (2011), the former 2010-2011 President of Massachusetts Medical Society Vital Signs article states that “a little more than two months ago, my brother-in-law, a middle-aged black man with diabetes, died. When he presented with foot pain, a physician failed to remove his sock and examine his foot. That set in motion a tragic cascade of misdiagnosis, preventable hospitalizations, amputations, a sacral decubitus ulcer, and eventually a fatal infection.”
David Bynum was transferred from a Brooklyn, New York Hospital to New England Sinai Hospital, Massachusetts in July 2010. I learned after my father’s death from an article on the Internet that “New England Sinai Hospital in Stoughton, which provides long term care to the seriously ill, stopped admitting new patients today, after public health officials found that staff were not properly caring for patients’ wounds and, improperly restraining others, and had mistakenly placed an intravenous line in a patient’s foot.” My father David Bynum was admitted to New England Sinai Hospital in July 2010 and was discharged on January 10, 2011, and sent to his Brooklyn, New York home under Hospice care. On January 15, 2011, he died in his Brooklyn, New York home and the cause of death was listed as natural cause. Thanks to Regina Holiday and others who continue to promote the memory of David Bynum and the health care issues in America.
Eunita Winkey and David Bynum (The Walking Gallery)
“No More Clip Boards”
By: Regina Holliday
Merry Christmas & Happy New Year!