Tuesday, November 20, 2012

We are here for each other...

I wrote about my recent experience with the U.S. healthcare system in a blog post entitled, "Pushing a rock uphill while wearing roller skates." As implied by that title and as partly described in that post, my experience with the U.S. healthcare system continues to be challenging. And pushing a rock uphill while wearing roller skates, for as long as I've been doing so, can take an emotional toll.

Some people in similar situations have been able to find support online. Various communities of support exist online, many bringing together people with the same disease; crohnology.com, which I'll reference again below, is an example. Unfortunately, I've never been able to find that kind of online support. Less specific online communities exist that are of relevance; ButYouDontLookSick.com is an example. But most of what support I've been able to find online has come indirectly via reading the tweets and blogs of others.

Invaluable direct support came in early 2011 when a group dubbed the Friends of Richard Anderson (FORA) was formed. The core FORA and a FORA-initiated fundraiser prompted a flood of badly needed emotional support and a badly needed financial boost. But some of the support was accompanied by disbelief and confusing expectations of how and when I was to express gratitude. Something I needed was still missing.

The closest I came to experiencing what was missing came at Medicine 2.0'11 later in 2011 at Stanford University. I was selected to attend as one of several e-patient scholars. As such, I found myself among others who had had experiences akin to mine, and I began to feel some of the emotional support I had been missing.

Two months ago, Medicine 2.0'11 was followed up by the even more patient-centered Stanford Medicine X conference. And only one week prior was the Partnership with Patients Summit in Kansas City. Scholarships enabled me to attend both (see my nearby official Medicine X e-patient scholar portrait). During both of these events, I was able to hear from and more extensively interact with people who were:
  • true peers -- a community of people who truly understand much of what I've been through;
  • fighters -- people who have been equally unwilling to settle for what the healthcare system had offered to or prescribed for them;
  • teachers -- people wanting to educate others via sharing their stories and advice;
  • change agents -- people committed to preventing others from having terrible medical experiences.
Not all of these people were e-patients; many were medical personnel.

Much has been written about the excellence and the importance of these events. The Partnership with Patients Summit was unique in that it provided coaching to improve the effectiveness of patient advocates, and it began the process of formulating a national patient advocate agenda.

The programs of both Medicine 2.0'11 and Medicine X were inspired and inspirational. Videos of a few of the great presentations of Medicine X are available for viewing online. If you can watch only two, watch Regina Holliday's presentation and the presentation by Britt Johnson (pictured at left).

One of the recurring themes of Medicine X was the importance of the social to achieving the personal. Some examples: Pew Research Center's Susannah Fox referenced the integration of apps and a website with in-person support groups as the secret to the success of Weight Watchers; founder Sean Ahrens argued that the key motivator of crohnology.com use is that users' entries are status updates for all -- that users self-track for others, for sharing; IDEO's Dennis Boyle echoed this, stating that the quantified "us" is more motivating that the quantified "self"; and Ernesto Ramirez, leading facilitator of the Quantified Self movement, argued that the "ourness" of data is what matters most -- that a word better than the word "empower" would be "emp-our-r." At a subsequent "The Future of Health" event in Palo Alto, Keas's Adam Bosworth spoke about the increasing importance of gamification to individuals' achieving healthy behavior, arguing that if you're not a part of a team, you won't sustain in the game. 

Related to this is that at Medicine X, Kasier Permante's Christi Zuber and ExperiaHealth's Kim Petty argued that co-design is as important as the solution to any part of the broken healthcare system. Also at Medicine X, Rock Health's Nate Gross argued that disruption is a team sport. As Regina Holliday stated during her above-referenced presentation, "If everyone plays, everyone wins." A recent tweet by Regina to another patient advocate went deeper:

This is the kind of support I'd been missing. And the boost of energy from the Partnership with Patients Summit and Medicine X came just in time to impact my final preparations for a Pecha Kucha presentation entitled, "A Call to Action Regarding the Patient Experience" which I delivered at EPIC 2012 in October.

Will this feeling of emotional support maintain over time? I hope so. Both the Partnership with Patients Summit and Medicine X now have Facebook pages which should help. Plus I now interact online with attendees of these events more than I did before.

Someone at the Medicine X preconference e-patient dinner noted that more women than men comprised the e-patient contingent. I added that more women than men attended the Partnership with Patients Summit. Women at my table attributed this to women being more social than men about their illnesses, and women being more social about their illnesses with other women than with men. If true, does this limit the support available to a man?

Also consider the following recent words of an "incognito hospital CIO" quoted in the Society for Participatory Medicine's member mailing list:
"My cynicism is predictable, but I’ve always said that these conferences and their self-selecting, charged-up evangelists are buying the illusion that patient empowerment is increasing when it’s really not. Few examples exist where customers have convinced big businesses to change their ways, especially when those changes threaten their profits, and I can’t think of even one where it happened when those customers had little buying power discretion and in fact aren’t even paying with their own money. It’s going to take a lot more than some feel-good conferences attended by the same familiar faces and featuring demos of the latest cool app to change healthcare, if in fact it can be changed at all."
Though he was not referring to the conferences I've referenced in this posting, he would probably include them. 

So, is he right? Have I become a part of a movement that isn't growing and cannot succeed?

A full response would be inconsistent with the purpose of this blog post. However, I will offer a partial response partly and fittingly provided by a presenter at Medicine X. At Medicine X, Dr. Paul Abramson, arguing for a bottom-up approach to fixing the healthcare system, asserted that what is important is to do what is right, and instead of waiting for the world to lead, to let the world catch up. Given how the business environment has been changing in fundamental ways, I feel confident that these ideas and practices developing on "the edge" will increasingly attract "the core."

As for my need for support, I'll continue to look for a disease-specific online support community, and I'll hope that my being male will not interfere with my involvement. However, I already feel a stronger sense of support accrued via my participation in the three events referenced above. Perhaps someday I'll even feel worthy of being a part of Regina Holliday's amazing Walking Gallery (see nearby photo of members of the Walking Gallery in attendance at the Partnership with Patients Summit); the day I sport a jacket with a Regina painting about my story on the back might be the day I'll truly feel that we are here for each other.

Saturday, September 8, 2012

My application for a Partnership with Patients Summit travel scholarship

I've experienced an unnecessary healthcare nightmare, as I've documented in this blog. And because of that experience, I'm committed to doing what I can to reduce the chances that others experience anything similar. Affecting healthcare policy, the primary focus of the Partnership with Patients Summit, is a part of that commitment.

My focus, because of my terrible experience and because my profession is user/customer experience, has been on the patient experience. As Alan Blaustein states, "To achieve a patient-centric model (of healthcare), the patient experience has to be culturally central to the conversation and the solution." 

To that end, my healthcare blog has addressed not only my bad experience, but also the experiences of others, reasons for such experiences, and what might or should be done to change things. Two entries of particular note along these lines:

I address patient experience in my user/customer experience blog as well, where I've duplicated the first entry referenced above but also posted "A call to action regarding healthcare," an article I wrote that was published in UX Magazine. This article addresses some of what user experience professionals must do in order to play a role in affecting substantive healthcare system change.

I've begun to address these issues on stage as well. In April, I spoke at Creative Mornings San Francisco. Next month, I'll be speaking at EPIC 2012 in Savannah Georgia. I hope to do more speaking on these issues and have registered with SpeakerLink, a healthcare speakers bureau.

Though my healthcare nightmare suspended my consulting work, I was able to provide input to a project increasing patient input to national healthcare policy via social media in Australia. Once my consulting activity can return to normal levels, I intend to target related projects based in the U.S..

I've done a variety of other things as well, including volunteering to review PCORI funding proposals and participating in relevant tweetchats (e.g., #s4pm) and webinars (e.g., Achieving Patient Experience Excellence through Cultural Transformation). However, gathering together in person to address patient advocacy in a concentrated fashion is especially appealing. My attendance at Medicine 2.0'11 and Medicine X, made possible via scholarship, whets my appetite for the summit, since both feature(d) e-patients and their issues (see, for example, Medicine X's "Our e-patients" ebook, which includes a short profile of me).

So, I hope you will enable my attendance at the summit by awarding me a travel scholarship. I hope the words above reveal that I have the experience and commitment to contribute to the summit in a beneficial way, and I am quite sure the summit would help me to become a better patient advocate.

Note that the scholarship application instructions, requiring posting my application to my blog, are here.

Update: I was awarded a travel scholarship.

Thursday, September 6, 2012

Pushing a rock uphill while wearing roller skates

I encounter social media postings almost daily that say a lot that is relevant to my troubling and frustrating experience with the U.S. healthcare system and what might be done about it, and I (re)tweet about many of these via @Riander. However, tweets are largely fleeting and are noticed by only a few. Plus the nature of my relationship with and views about the content the tweets include or reference are often unspecified. So, I decided to curate some of the postings in the form of a story below akin to what one might create via storify. To keep things manageable, I've limited the social media postings I reference to a subset of those that appeared this summer.

Unfortunately, Jonathan Arnowitz's recent Facebook posting about something else sums up the present state of my frustration:

Two tweets by Sarah Kucharski -- fighting a rare disease -- also communicate my feelings, the first more directly:

Contributing to my feelings of fatigue have been innumerable inappropriate interactions with medical personnel. Kim Lynette Hawksey's Facebook posting of a few days ago provides an example akin to that which I've experienced several times, followed by (fortunately for Kim) an example of an appropriate physician-patient interaction:
"When I went to the VA in Gville on Tues, with my complaints of back pain, the ER triage guy was quick to say, 'Oh it's muscle pain, and muscle strain is worse you know.' I looked at him and said, 'It is not muscle pain.' I wanted to say, 'I have lived in this body quite a long time and I have learned to tell when it is a muscle issue and when it is not." But I held my tongue. He then ordered xrays. Fast forward 4 hrs of waiting on results and being sent to the Urgent Care section of VA. The Urgent Care specialist looked at me, listened to me and then told me that my lumbar xrays showed no breaks, but significant degenerative changes. I then asked him why it hurt where it hurt, which was not in my spine. He was good to stand me up, and finally, someone actually asked me where it hurt. I showed him. He said the ER triage guy didn't order enough or the right xrays. Because I insisted this was not muscle pain, and the Urgent Care guy listened and paid attention, I was sent back for the appropriate xrays. The results came back that I have 3 fractures on the right side of my back. My point is this: when you know that you know that you know, persist and insist until you are satisfied that the right things have been done. ... Always ask questions and do not be satisfied until you are satisfied with the answers. Trust your instincts."
Making Kim's interaction with the Urgent Care specialist a type that is the norm is partly the reason for the e-patient movement (see, for example, the Medicine X "Our e-Patients" ebook that includes a short profile of me). However, a nurse participating in a recent Society for Participatory Medicine (#s4pm) tweetchat goes further:

This is particularly true for those who suffer from diseases classified as "rare," as suggested by the second sentence of RareConnect's recent Facebook posting:

According to Pew Research Center's Susannah Fox, "people living with rare disease are health care hackers -- forced to navigate the maze of health care in new ways." But some of the obstacles to that novel navigation are not insignificant. Improved physician-patient relationships would greatly help.

Why are physician-patient interactions so often less than desirable? One explanation:

Among my frustrations has been how rare it is for doctors to be aware of and acknowledge the limitations of their knowledge. This is somewhat captured by the following physician's tweet:

In my and others' experience, doctors also tend to discount the value of patients researching what ails them via the internet.

As for the inadequate amount of time doctors spend interacting with patients:

This probably contributes to the great rate of physician burnout, which appears to be significantly associated with "viewing patients more like objects than human beings." Additionally:

Three more of Sarah Kucharski's tweets are relevant to this:

A few summer postings addressed cultural forces at play. For example:

Dr. Bryan Vartabedian discussed physicians' "ingrained culture of fear," and Dr. Pauline Chen described the "bullying culture of medical school" that influences how physicians behave towards patients. (See my "In Need of Transformation: The Patient Experience" for a description of other, related cultural impediments.)

Dr. Eric Van De Graaff puts it a bit differently:
"One (theory I have) is that all medical students believe they will go on to become an Albert Schweizer in their field -- kind, self-sacrificing, benevolent -- but somewhere along the way a certain fraction of them let the glory of their career go to their heads and begin to treat patients and underlings like chewing gum on a movie theater floor."
The following tweet communicates that all too common kind of patient experience:

Acknowledgement that there is a problem has led to the initiation of programs in a variety of institutions to try to make healthcare more patient-centric. But as Alan Blaustein states, "We have a long way to go until we get to 'patient-involved,' much less 'patient-centric.'"

Even basic involvement is often missing, as reflected in Kim Lynette Hawksey's story, John McSwain's tweet, several of my experiences, and in the following cartoon appearing in a Stephen Wilkins blog posting:

Stephen writes a lot about poor physician-patient interactions and the importance of improving them. Here are the titles of some of his summer postings: 

And his postings sometimes advise patients on what to try to do to improve those interactions. Kim Lynette Hawksey's story above ends with such advice. A participant in another Society for Participatory Medicine tweetchat offered a related suggestion:

"Many (patients) are too intimidated to take issue with anything a doctor says. But doctors aren't always right, and patients who are afraid to argue can pay the price. A friend had his cancer properly diagnosed only after he challenged his doctors' opinions about what was wrong."
I have learned how to argue with doctors, but that has not always mattered. Indeed, changing how patients interact with physicians does not alone solve the problem.

To change physician behavior, many argue for the need to develop their ability to empathize with patients. Dr. Pauline Chen writes:
"Empathy has always been considered an essential component of compassionate care, and recent research has shown that its benefits go far beyond the exam room. Greater physician empathy has been associated with fewer medical errors, better patient outcomes and more satisfied patients. It also results in fewer malpractice claims and happier doctors."
But can doctors learn how to be empathetic? Two summer blog postings, including Pauline's, point to studies of short-term training that suggest the answer is "yes."
"Compared with their peers, doctors who went through the empathy course interrupted their patients less, maintained better eye contact and were better able to maintain their equanimity if patients became angry, frustrated or upset. They also appeared to develop resistance to the notorius 'dehumanizing effects' of medical training. After the empathy classes, one physician who had complained about being burned out said, "I feel as though like I like my job again."
But some people aren't convinced.

"empathy can't be achieved with a one-time, remedial skills development course. It's a shift in philosophy and behavior that requires daily reinforcement to make a difference. Trying to provide an empathy boost with a one-time investment without follow-through is a waste of money and can become a source of resentment from a staff. Building an organization that is truly wired to care requires commitment by all stakeholders to genuinely put empathy for patients as a top priority and the subject of every other conversation about change and strategy."
Pete's approach has a greater chance of helping to achieve the cultural transformation that is needed. In a blog post addressed to medical organizations, The Beryl Institute's Executive Director puts it this way:
"Simply putting tactics in place has you run the risk of turning your patient experience efforts into the latest flavor of the month activity. Patients and their families and yes your colleagues and employees deserve much more. To truly drive an exceptional patient experience, you can only influence perceptions through the choices you make -- one of the most critical of those being the type of organizational culture you choose to create."
Joseph Mitchell's words provide a warning to those who fail to attend to (the need for) cultural change: 
"putting good frosting on a bad cake does not a positive experience make"
People in my profession of user/customer experience should understand this well but too often don't get the opportunity to apply their skills towards making a good cake. One posting touting the contributions of experience designers to changing healthcare comes close to selling experience designers short. However, the posting ends optimistically:
"Our best national resource is our wealth of entrepreneurial and design talent. Armed with the right tools and resources..., they can power the next generation of health care in this country. Perhaps given some time, they'll even help to build a system that is worthy of song and dance."
Meanwhile, people like me keep pushing that rock uphill while wearing rolling skates -- unsure of what to do now, what to do next.

Wednesday, September 5, 2012

Reading the story in proper sequence

To maximize and ease comprehension, the best approach is to read this blog's initial posts in the order they have been posted. This post is intended to facilitate that.

The proper sequence:
-- My Real Life, Unnecessary Nightmare --
a short intro

-- What is (neuro)cysticercosis? --
definitions from multiple perspectives

-- Symptoms I've experienced --
the long list

-- The story begins --
the initial symptoms spanning December 2008 -- April 2009

-- The nightmare worsens --
disastrous results of turning to the wrong "friends" for help (April - May 2009)

-- The nightmare worsens even more --
wild seizures and the loss of my home and many of my belongings (May through June 2009)

-- The nightmare starts to turn into a hell --
the nightmare at my sister's home (into August 2009)

-- I enter hell --
being terrorized and finally escaping (into September 2009)

-- Just how much had I escaped? --
the obstacles now before me

-- Living "on the street" --
my life as a homeless person

-- Getting the right medical help --
obstacles to my finding a competent parasitologist

-- To those who chose to not believe me --
references to other cases

-- Moving forward --
what I am trying to do and what I hope to do

-- Arrival of the cavalry --
the coming together of FORA
-- Reflections on gratitude --
on giving and receiving
-- In need of transformation: the patient experience --
some of what is wrong & some of what is happening to put things right
-- Living "on the street" (part II) --
more on my life as a homeless person

-- Be careful whom you call crazy --
things that give me a peculiar kind of pause

Saturday, July 21, 2012

Be careful whom you call crazy

Certain words, certain utterances tend to give me pause in a different way than they would have before the year 2009.

For example: my being told that something "should make me feel how lucky I am" or "make me not want to take things for granted," with a reference to someone or some group of people who has survived something undesirable, such as the loss of a limb.

Claims that someone is crazy -- even frivolous claims in everyday conversation -- catch my attention.

So do words expressing outrage about something terrible that was done to someone or more people, such as recent cries of outrage over a woman executed by the Taliban in Afghanistan, over government killings of citizens in Syria, over the behavior of Penn State officials regarding Jerry Sandusky, and over the killings in the Colorado movie theater, the latter expressed in the following Facebook posting, including a scolding:

Why do these words give me a peculiar kind of pause? As someone recently wrote, due to my having "suffer(ed) horrendous health problems, insults to (my) dignity, startling erosions of and betrayals in relationships, criminal malfeasance and neglect, etc." as I've documented in this blog.

Beginning in 2009, I experienced a scary illness that should make anyone not want to take things for granted. I've been called crazy to my face by medical personnel who themselves were the people behaving as if they were crazy. I've experienced things that should prompt extreme outrage, and I've sometimes felt like scolding the people in whom they did not.

These nightmare experiences will give me pause for the rest of my life more than any of the related utterances I hear today.

Just be careful whom you advise about how they should feel. Be careful whom you call crazy.

Thursday, March 8, 2012

Living "on the street" (part II)

A version of this post has been published in Souciant magazine.

This past December, I "celebrated" my one year anniversary of living on the street. Hence, tis a bit overdue for me to provide an update to my first posting on being homeless as well as share some thoughts about the experience.

My one year anniversary found me still based in my car, which is a blessing compared to the many people trying to get by in the growing number of tent communities in the U.S. or with no roof at all. Following another car resident's advice, I found an appropriate area in which to park my car each night. I nestle my car amongst others on a street next to a major park bordered by a sidewalk, a wall, and tall trees. There, when reclining, I'm usually out of view of the windows of residences across the street. Nevertheless, I don't go completely unnoticed, but most who notice me are patrons of nearby restaurants and bars who are arriving or departing with more important things on their minds. I am also blessed that the park guard who walks by my car each night shining his flashlight through my car windows has never notified the police about me or other car residents who are sometimes not far behind or in front of me. The ease at which I am able to sleep in my car there is surprising, though keeping the radio on softly all night -- thank you car battery -- is no doubt a contributing factor.

Perhaps reducing the risk of my sleeping there has been my usual departure between 3 and 4am to go to San Francisco's only 24-hour Starbucks. At about that time, seats start to open up as students who usually fill the place finally decide to call it a night. Customers staying for hours is a norm there that would not fly in many other places, and I -- and the many students -- are indebted to Starbucks for the courtesy. This Starbucks cafe and others have combined to become my low-cost office. As Starbucks puts it, "Starbucks is pleased to offer complimentary Wi-Fi including the premium content of the Starbucks Digital Network to customers who are enjoying our food and beverages."

The parking area next to Marina Green has remained what I call my primary living room. The great views there are supplemented by the antics of numerous dogs and their owners and of dozens of young soccer players. Most interesting, though, is the daily routine of a woman I call the Bird Lady of Alcatraz. Each day, she spends a few hours parked by San Francisco Bay -- within view of Alcatraz -- feeding, petting, and speaking to the pigeons (many often adorning her head, shoulders, and arms), while being the subject of many a(n unwanted) photo.

My "feeding" became partly subsidized by the state of California via $200 of "food stamps" per month. Thankfully, "food stamps" now come in the form of a machine-readable card, but food checkout can still be cumbersome and, hence, attention-getting if the checkout person doesn't detect quickly enough that a food stamp card is being used to pay. There are also odd restrictions on card use, including the prohibition of buying hot food at a grocery store; what makes this odd is that carriers of such a card are probably often without means of heating food while the card can be used to purchase hot food at designated restaurants. (And don't get me started on the broken process for applying for food stamps...)

Much of my "petting and speaking to" has come from the person who kindly receives and holds my mail for me. The conversations that I have had when I collect my mail are always warm, meaningful, in depth, and invaluable. He has also treated me to viewings of museum exhibitions coupled with insightful commentary derived from his abundant artistic expertise. (Additional and daily invaluable "petting and speaking to" has come via phone and the internet from someone 7400 miles away.)

I've made very few connections with others who are homeless, but I've come to know how diverse the homeless community is. One of the leading findings from research done by students at the Austin Center for Design (ac4d) was the extent to which stereotypes of the homeless are wrong. This was highlighted in the news recently by two stories, one estimating that 2000 children attending San Francisco schools are homeless, and the other about a homeless teenager in Long Island who was a semi-finalist in a prestigious Intel science competition.

I greatly appreciate efforts such as ac4d's to tell the stories of the range of people who find themselves homeless. Other such efforts include Vaughn McIlrath's blog of stories about the homeless people he has interviewed, Pachi Tamer's attempt at "putting a face on the homeless" via use of Instagram, the Palo Alto Online News' descriptions of some of the "vehicle dwellers" in Palo Alto CA, the Unheard in New York project via which homeless people told their own stories via Twitter, and Wendy MacNaugton's touching visuals and stories about people living in the downtrodden San Francisco neighborhood centered at 6th and Mission. I am also impressed by Australia's declaration of a week in August as being National Homeless Persons Week.

Also based in Australia is a fundraising project called the "CEO Sleepout: Rise to the Challenge" via which Australian business leaders meet and hear the story of a homeless person then proceed to spend the night in the rough to get a sense of what many of Australia's homeless are forced to experience every night.

San Francisco efforts to bring people in meaningful contact with the homeless include the "Curry without Worry" project which offers free Nepalese food each Tuesday evening "to foster 'a merging of communities' between the haves and have-nots" and an annual block party outside of St. Anthony's where more than 3000 free lunches are served each day.

All of these efforts are laudable, but in our mainstream culture, attitudes and behaviors towards the homeless leave perhaps too much to be desired. I've attended both of the local events referenced above and could count the number of "haves" in attendance on a single hand. Some days it seems as if the "haves" are completely content to look down their noses on the homeless as reflected in a U.S. law firm's Halloween party at which everyone was costumed to mock the people that the firm -- known as a "foreclosure mill" -- made homeless. Nilofer Merchant highlighted the depth of this cultural divide this way:

As argued by Barbara Ehrenreich, "to be homeless in America is to live like a fugitive."

Sadly, I've witnessed numerous negative attitudes and behaviors towards homeless people, from unwarranted harassment by police officers at a farmers market to a tweet expressing disgust with a homeless person seen asking for money so he could purchase a Starbucks latte. Are homeless people to be always deprived of pleasures that others can take for granted? Sometime take a look at all the derogatory comments made about Palo Alto's homeless in response to the article referenced above describing some of them. As Becky Blanton stated in her TED talk entitled, "The year I was homeless": "society equates living in a permanent structure with having value as a person" and "how quickly the negative perceptions of others can impact our reality if we let it."

Fortunately, I've only been harassed on the street once, though many probably kept their distance at other times when the number of showers I was able to take each week was two. Presently, that number is back to "normal" and has been three other periods of time when I've been fortunate enough to secure house-sitting gigs. Though it has been great to experience some degree of normalcy again during such gigs, I've discovered that a special kind of freedom and vulnerability is actually lost when I once again have a home, even one that is temporary.

What can you do? Quite simply, open your heart and mind to those who are homeless. As one homeless person said to the Chicago Daily Herald, "[those who judge the homeless] need to sit down and talk to someone who is homeless once in a while and find out more of the story."

We homeless are people, too.

Wednesday, February 15, 2012

In need of transformation: the patient experience

Brenda Laurel, a highly-respected designer, researcher, writer, and currently chair of the Graduate Program in Design at California College of the Arts, had surgery last fall at the Stanford Medical Center. Brenda tweets infrequently, but here is what she tweeted following the surgery:

If you've read previous entries in this blog, you know that Brenda's tweet would pale in comparison to the tweets I would author about my patient experience.

Were our experiences unusual? Sadly, no. After spending two days in the hospital last year with his young daughter who was undergoing some diagnostic tests, Alder Yarrow, a former colleague of mine, recounted his experience and concluded:

"Of all the industries we interact with regularly as consumers, the medical industry definitely defines the low point in quality and consistency of customer experience. Most of us emerge from interactions with the medical establishment feeling more like victims than paying customers."

Speaking of this lack of patient experience consistency, Dave deBronkart, a.k.a. e-Patient Dave (a full-time, empowered patient advocate), detailed "physicians' unwarranted variation in practice" which "has been shown to cause immense unnecessary surgery, with the resulting costs and inevitable percentage of errors and deaths after surgery that wasn't necessary in the first place."

Unnecessary deaths were addressed in a U.K. researcher's tweet in December:

According to leadership guru Steve Denning, "medical errors cause in the order of 100,000 deaths per year."

In a commencement address at Harvard Medical School last year, Atul Gawande M.D. said:

"Two million patients pick up infections in American hospitals, most because someone didn't follow basic antiseptic precautions. Forty per cent of coronary-disease patients and sixty per cent of asthma patients receive incomplete or inappropriate care. And half of major surgical complications are avoidable with existing knowledge."

A recent study by the Department of Health & Human Services revealed that:

"One in four hospital patients are harmed by medical errors and infections, which translates to about 9 million people (in the U.S.) each year. ... Hospitals are doing a poor job of tracking preventable infections and medical errors and making the changes necessary to keep patients safe."

The author added, "...hospitals don't seem to give a damn about fixing things."

Jay Parkinson M.D., viewed as a rebel in the medical community, wrote about the experience of getting his dog properly diagnosed and treated when his dog was on death's door. He contrasted that experience, which he raved about, with the experience that most humans receive in the U.S.:

"the dominant experience for most people...is unsafe and inhumane."

Donald Berwick M.D., who oversaw Medicare and Medicaid until this past December, went further:

"Health care is broken. ... We have set up a delivery system that is fragmented, unsafe, not patient-centered, full of waste, and unreliable. Despite the best efforts of the workforce, we built it wrong. It isn't built for modern times."

My patient experience was plagued from the get-go by a major misdiagnosis. So-called rare diseases -- diseases, including mine, that have been diagnosed in fewer than 200,000 people in the U.S. -- often take a long time to diagnose: greater than 5 years in many cases, according to the National Institutes of Health's Office of Rare Diseases Research (ORDR). Almost two decades were required to correctly diagnose the rare disease of a nurse I've met online who now devotes a lot of her time to educating the public about her particular disease which caused her to suffer multiple brain aneurysms.

Delayed and inaccurate diagnoses are two of several problems that tend to plague all victims of rare diseases. According to the Presdient & CEO of the National Office of Rare Disorders (NORD), other problems include difficulty finding an appropriate medical expert, few treatment options, lack of awareness and understanding of the patient's needs, and a sense of isolation. All of these were among the problems I experienced and to some extent continue to experience.

Should anyone ever need to experience those kinds of problems? My answer is, "no." Nor should anyone with any disease have to experience a healthcare system that is as broken as ours. The patient experience in the U.S. (and in many other countries) needs to be transformed. Not just improved, but transformed, as reflected in this graph from Kerry Bodine of Forrester Research. And fast -- as fast as possible.

What all contributes to such poor patient experiences?

Here is a subset of the contributors -- some of the systemic contributors, some of which overlap with others, and all of which contributed to my terrible patient experience.

Doctor arrogance

This contributor has been receiving a lot of attention in recent months. An article in The New York TImes last year started with these words:

"Doctors save lives, but they can sometimes be insufferable know-it-alls who bully nurses and do not listen to patients."

Jay Parkinson M.D. weighs in a lot on the topic of doctors being "insufferable know-it-alls." For example:

"Doctors have such a preoccupation with being right, they can't tolerate being wrong."

And the title of a report published a couple of days ago by the LA Times alone says a great deal: "Many doctors hide the truth about medical errors, study finds."

Because nurses are bullied so often by doctors, nurses more often than not do not have the courage to speak up when doctors make errors. A recent occurrence that got a lot attention in the press and on Twitter involved a doctor in Arizona who exploded with anger because a nurse corrected a patient's misunderstanding -- a misunderstanding caused by the doctor -- about treatment options. The doctor threatened to have the nurse fired and to have her license to practice revoked, and he successfully followed through on both threats. A report written by a nurse about this case stated the following:

"[the nurse's] story is one of an archaic medical model in which the doctor's word is supreme and we are all just nurse maids here to do their bidding. ... I'm really disgusted that a healthcare organization would bow to the tantrum of one very arrogant and immature physician. If there was one example of a surgeon with a God-Complex, this is one."

Not only are nurses afraid of doctors, so are patients. They often don't know when to talk and often fail to ask questions. According to Stanford's Abraham Verghese M.D., patients are interrupted when they do talk on an average of every 14 seconds. Verghese argues that the physical exam is a sacred ritual, one that doctors violate on almost every occasion.

Often, a patient's experience of his or her illness is critical information for an accurate diagnosis. As Paula Thornton put it in a recent discussion about patient experience in the Design Thinking LinkedIn group, "in the absence of a patient's story of the illness, you are practicing veterinary medicine."

Sadly, things don't always go well when patients insist on being heard. An example of such a case was when a doctor, in effect, fired a patient -- i.e., told her that she was no longer permitted to return -- when she asked to get a second medical opinion. It turned out that she was right to do so, as her first doctor's conclusions were wrong.

According to Stephen Wilkens M.P.H., an estimated two-thirds of physicians treat patients in a paternalistic way.

Lucien Engelen M.D., who heads an innovation center focused on the quest for participatory healthcare, put it this way:

"there is something very wrong with healthcare. At present it is mainly one-directional traffic. Doctors say that they talk to patients; perhaps so, but there isn't real negotiation with the patient. For a doctor, the patient too often is simply a disease that generated data on which they base their medical decisions. There is no real co-decision."

In a TED talk of last year, Jeff Benabio M.D. described the series of reinventions doctors underwent throughout history. Relatively recently, Jeff claimed, "we let our arrogance reinvent us ... we thought we were gods again."

USC's Dave Logan, in one of his TED talks, described the five stages that tribes -- groups of people -- go through:

  1. Life Sucks
  2. My Life Sucks
  3. I'm Great
  4. We're Great
  5. Life's Great

According to Dave, the problem with healthcare is that doctors are a stage 3 tribe -- people who most often talk in the terms of "I," "me," and "my." Stage 3 tribes are comprised of people who think that others should just shut up and do what they say.

Atul Gawande M.D., whom I referenced earlier, says that "We train, hire, and pay doctors to be cowboys."

In a TED talk, Dr. Brian Goldman M.D. argued that physicians live in a culture of denial, unwilling to admit to or talk about their mistakes.

"If I were to walk into a room filled with my colleagues and ask for their support right now and start to tell [stories of all the mistakes I've made], I probably wouldn't get through two of those stories before they would start to get really uncomfortable, somebody would crack a joke, they'd change the subject, and we would move on. ... That is the system that we have -- it is a complete denial of mistakes. ... [However,] errors [in medicine] are absolutely ubiquitous."

Wendy Levinson M.D. references yet another culprit in stating that "perverse incentives have contributed to physicians developing 'efficient styles' that squeeze out time to listen [to patients]..." However, perverse incentives are probably not alone responsible for this, as scores of empathy levels of young physicians correlate with patient outcomes better than any of medicine's traditional metrics.

I've tweeted very little about my patient experience, but one day I couldn't hold back:

This neurologist totally dismissed my recollection of what happened to me (to the extent that she permitted me to tell my story), claiming, for example, that the seizures that had me flopping all over the floor in a semi-consicous state must not have been seizures at all. According to her, they must have only been "muscle twitches."

As a doctor who tweets and blogs anonymously recently wrote:

"One of the worse maladies plaguing the medical field is piss-poor communication, and [my own] orthopedist has about the communication skills of a mentally-retarded clam."

A report from The Onion that weighs in on this topic is entitled, "Patient Referred to Physician Who Specializes in Giving A Shit":

"NORTH PLATTE, NE -- After visiting his primary care physician Tuesday with complaints of intense pain in his left leg, computer programmer Dan Fields was referred to a specialist who focuses on giving a shit. "I want to send you to someone who specializes in not dismissing you brusquely after three minutes," Dr. Paul Niles said as he hastily scrawled out a referral and pushced Fields to the door. "Dr. Lewis is really one of the best out there at regarding patients as actual human beings. If anyone's going to listen closely without resenting you for taking too much of his time, it's him."

Doctors do not think creatively

Jay Parkinson M.D. has written:

"Medical education and residency is pretty militaristic. You fall in line or you're out. Trust me, I've been there. If you are an 'outside the box' thinker, this doesn't last long in medical school or residency. The egos of your superiors are too threatened. This is an important fact. Doctors have such a preoccupation with being right, they can't tolerate being wrong. This is of course needed because who wants to go to a doctor known for being wrong all the time?"

And in both his TED talk and his Medicine 2.0'11 talk, Jay said:

"the medical culture is not only uncreative, it is anti-creative. ... Why should doctors be creative? ... Doctors only have pills and scalpels. ... Our reality is very different from an innovative, creative culture. ... We fall into line. ... Whenever we treat patients we treat them with algorithms. We regurgitate; we don't think creatively. We also have this thing called a god-complex... And we're just so frickin tired... And we're terrified of the law."

And they are terrified to fail board exams, as suggested by a recent news report about extensive cheating by doctors around the country taking an exam to become board certified in radiology. I mention this particular report because of the huge role radiologists played in my misdiagnosis.

As the representative of NORD tweeted during a tweetchat last summer:

According to James Howenstine M..D., "conventional medical practice in the United States largely ignores the possibility of parasitic disease" -- which is the disease that nailed me. He wrote that in 2004 but reiterated it in email to me last year. Parasitic disease is most associated with third-world countries where it isn't classified as "rare."

Doctors' dismissal of things patients learn via the internet

"You can't believe what you read on the internet," remains a common refrain among doctors -- a tribe of people who don't much care for their knowledge to be challenged. I've experienced this refrain repeatedly from multiple doctors, many making claims about my disease that my very careful research using the internet reveal to be completely false. "You simply must have not understood what you read," is the followup reaction when I present printouts of my research findings. This reaction is so common that even the few doctors who do use and know how to rely on the internet are afraid to say so:

High prevalence of medical personnel handoffs

Extending my earlier quote of Atul Gawande M.D.:

"We train, hire, and pay doctors to be cowboys. But it's pit crews people need."

However in healthcare, those pit crew members are usually separated by organizational boundaries:

"Patients experience healthcare horizontally -- with many individuals from many teams. Most breakdowns happen in the handoffs."

Some of the supportive data:

"In the past year, 42 percent of Americans reported coordination gaps related to medical records or tests, or communication failures between providers. A fourth said that their medical records or test results were not available during a scheduled visit or that tests were duplicated."

And this results in more than mistakes:

"Frequent handoffs in transitions of care, increasingly common today, make time to connect with patients even more challenging."

Other contributors exist, including difficulty finding and getting access to doctors with the needed expertise, which, as I mentioned earlier, is particularly hard for people suffering from a rare disease. And I've made only a veiled reference to the huge role played by insurance companies. However, I now turn from consideration of contributors to poor patient experiences to (potential) solutions.

What might be done to transform the patient experience given such contributors to poor patient experiences?

Here are some of the efforts that are in progress or that have been proposed.

Screening medical school applicants for people skills

Some medical schools have begun to use what is called a multiple mini interview, or M.M.I., as part of their admissions process to determine whether candidates have the social skills and the perspective needed by a good doctor. During the M.M.I. at one school, candidates are given eight minutes to discuss an ethical conundrum which they were presented with only two minutes earlier; this happens 26 times for each candidate, once for each of 26 ethical conundrums.

"Candidates who jump to improper conclusions, fail to listen or are overly opinionated fare poorly because such behavior undermines teams. Those who respond appropriately to the emotional tenor of the interviewer or ask for more information do well... because such tendencies are helpful not only with colleagues but also with patients.

Candidate scores on [the M.M.I.] have proved highly predictive of scores on medical licensing exams three to five years later that test doctors' decision-making, patient interactions and cultural competency."

At the time this article was published (July 2011), eight schools in the U.S. and 13 schools in Canada were using the M.M.I.

Teaching soft skills to medical students

Instead of or in addition to screening medical school applicants for social skills, how about training those who get into medical school? As Wendy Levinson M.D. stated in the Journal of the American Medical Association:

"medical schools and residency programs provide relatively little education about effective communication skills compared with the educational time devoted to teaching science and technology. Furthermore, medical students and residents are rarely observed during their interactions with patients or given specific feedback to improve their communication."

Here is one example of something that will be done along these lines as reported by CBS in Chicago this past October:

"A Chicago couple thinks a doctor's bedside manner is so important, they're giving the University of Chicago $42 million dollars to teach it. Matthew and Carolyn Bucksbaum are backing the Bucksbaum Institute for Clinical Excellence at the University of Chicago. It will be led by Dr. Mark Siegler -- who's been the couple's physician. They say he's the kind of doctor students should emulate. Carolyn Bucksbaum said the couple was motivated to make the donation after she once had a bad experience with an arrogant doctor who dismissed her illness."

Systems for patient rating of doctors & hospitals

Several efforts are underway beyond the use of Yelp to enable patients to rate doctors and hospitals. For example, there is a business in the U.K. called Patient Opinion which collects patient stories -- good or bad -- about experiences of U.K. health services and then passes those stories on to the right people so the stories can make a difference. Patients also have access to stories others have submitted.

There have been multiple calls for more systems of this nature (e.g., "Choosing a doctor should be like the Amazon shopping experience"). And several articles have been written arguing that patient complaints and poor ratings provide an opportunity for doctors and hospitals to improve (e.g., "Great hospitals permit patients to rip them to shreads").

Organizations devoted to achieving change

Two organizations of particular significance have been formed. One is the Society for Participatory Medicine (a.k.a. S4PM), a society that claims to be "bringing together e-patients and health care professionals," though it appears to have become mostly a voice for or of the patient community; S4PM says it is part of "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." The other organization, aimed more strongly at the medical community, is The Beryl Institute, billed as "the global community of practice and premier thought leader on improving the patient experience in healthcare." Oddly and unfortunately, neither organization appears to communicate with or know very much about the other.

There are a handful of other organizations with related missions, including the Center for Health Transformation, the Group Health Cooperative, and the Radboud Reshape & Innovation Center. And there are a few design consultancies focused largely if not entirely on healthcare; of these, "the future well" warrants special note, as it was co-founded by none other than Jay Parkinson, the rebel M.D. whom I've referenced above a couple of times and will reference yet again below.

Online patient communities

A major development has been an increase in the number and sophistication of online communities designed to provide support to patients and to enable patients to help each other. Notable examples include: PatientsLikeMe.com, which spans a wide range of diseases; Crohnology.com, developed by a patient with Crohn's disease; and RareDiseaseCommunities.org. Online communities have helped many to get the care they need to the point, in some cases, of saving people's lives; interestingly, one of the most publicized examples of this happened via the use of Facebook.

An article published this month in Forbes identifies and describes a few more of these online offerings. A comprehensive list is badly needed.

Convincing patients to change their ways via articles, blog postings, white papers, videos, webinars, workshops, tweetchats, talks, conferences, ... from enlightened/empowered/engaged patients

Several of the online communities just referenced provide this kind of help, along with the Society for Participatory Medicine. A large number of individuals are providing this kind of help as well.

Some of the articles and other forms of communication or interaction provide guidance for becoming e-patients; Tom Ferguson's 2007 seminal white paper entitled, "e-patients: how they can help us heal healthcare," and Fred Trotter's January 2012 blog posting entitled, "Epatients: The hacker of the healthcare world" are two examples.

e-Patient Dave's contributions, including his TED talk, are particularly well-known. Dave has recently begun to offer a series of e-Patient Boot Camps around the world. Additional patients, including myself, are also speaking out in various ways. A patient experience speakers bureau was launched just last month.

Convincing doctors to change their ways via articles, blog postings, white papers, videos, webinars, workshops, tweetchats, talks, conferences, ... from enlightened medical personnel

Doctors and other medical personnel are beginning to make contributions of this nature, some of which I've referenced above and some via the The Beryl Institute also referenced earlier. A popular blog offered by Kevin Pho M.D. features postings from a large number of medical personnel; many postings there are duplicates of postings that can be found elsewhere on the internet. Of course, since doctors aren't, on the whole, big users or fans of the internet, the reach of many of these offerings are somewhat limited.

Recent conferences of relevance include Medicine 2.0'11 held at the Stanford Medical Center, the Patient Experience: Empathy and Innovation Summit held at Cleveland Clinic, Transform 2011 held at the Mayo Clinic, and the ECRI Institute's 2011 Conference focused on Patient-Centeredness in Policy and Practice held in the offices of the U.S. Food & Drug Administration. The first three have 2012 versions upcoming. A conference that looks promising is Stanford Medicine X which will convene for the first time in September.

Some medical conferences have been criticized for failing to feature e-patient speakers or for not catering to potential e-patient attendees. A symbol was recently developed for use by conferences if patients have been adequately and appropriately considered and represented.

An interesting approach taken by NORD was the publication of an insert for a July 2011 issue of the Washington Post. NORD also sponsors an annual Rare Disease Day. However, potentially more helpful with respect to select rare diseases, including mine, was the 2011 publication of a book entitled, "Wicked Bugs: The Louse that Conquered Napoleon's Army and Other Diabolical Insects"; the author was interviewed on many television and radio programs including NPR's Fresh Air and KALW's West Coast Live. These publications, events, and programs were targeted at the public in addition to the medical community.

Employing alternative healthcare models

The most relevant change advocated is one in which healthcare becomes patient-centered. Such a model changes the role of the patient to, as referenced earlier, that of a driver rather than a passenger -- to that of someone medical personnel do things "for" rather than "to." As put by one M.D., "we need to treat our patients as people and not as disease states."

Jain and Rother have contrasted the views of patients as knights, knaves, and pawns:

"If a society conceived of patients as well-intentioned knights, it assumes that the will and values of patients should drive the structure and organization of health care... The role of policy and payment is mainly to empower patients and physicians working together toward shared aims; insurance coverage should make these interactions as facile as possible.

If a society conceives of patients as knaves, policy, management, and education efforts are designed to work against patients, not with them. Waste and even fraud are the behaviors that come most naturally to the knave -- and it is the role of physicians and health insurance companies to monitor for this behavior...

If societies conceive of patients as pawns, efforts are applied to building systems that ensure patients do what is right for themselves and for the health care system, because patients cannot be trusted to do so on their own accord.

...the patient in the United States today is seen either as a knave or a pawn and is seldom viewed as the knight. Patient-centeredness is lost in a tangle of insurance arrangements."

In spite of this dominant, negative perspective of the patient in the U.S. today, Jay Parkinson leveraged technology to develop a patient-centered practice:

"'...decades ago doctors served their neighborhoods, took cash, and didn't charge a lot because there was so little overhead. So I designed a process that went back to this model, looking at it from the patient's perspective, and just injected a little technology.'

With $1,500, he set up a house-call-only practice in his Brooklyn, New York, neighborhood, serving only two zip codes. He created a website through Applie's iWeb that featured his resume, and posted his schedule on a Google Calendar so patients could enter in an appointment time online.

He also opened a PayPal account for payments, and used Formstack to create forms for gathering patient medical histories and to create specific questionnaires for particular ailments.

Whereas most practices deal with significant costs in office management, Parkinson's start-up costs went to getting his license and buying tools, such as an otoscope and doctor's bag."

Though Parkinson's practice was solo, he used technology to consult with other experts if he needed additional insight. Indeed, a trend still in its infancy is to move medicine "from an individual to a team sport. Solo medical practices are disappearing. in their place, large health systems -- encouraged by new govenment policies -- are creating teams to provide care coordinated across disciplines. The strength of such teams often has more to do with communication that the technical competence of any one member."

The authors of The Innovator's Prescription contrasted a serial, solo approach with a team approach via the following story:

"A friend of ours has suffered from asthma for much of his life. Each specialist he saw seemed to have another possible remedy. It got to the point where he was taking multiple medications with multiple side effects, whose combined cost at one point exceeded $1,000 a month. Then he visited the National Jewish Medical and Research Center in Denver Colorado... a solution shop focused on pulmonary disease, particularly asthma... When our friend arrived, they administered a unique battery of tests, then assembled an allergist, a pulmonologist, and an ear, nose and throat specialist -- to meet together with him. They integrated their perspectives on his long medical history together with the test results, told him what was causing his symptoms, and prescribed a straightforward course of therapy that finally solved his problems."

Delightfully, designers have begun to address healthcare on this level. A team of designers headed by Hugh Dubberly wrote in interactions magazine about a healthcare model of self-management that is considerably patient-centered. The nearby table -- click to enlarge -- contrasts this model with the traditional model. The section at the bottom of the table reveals how the traditional focus for the designer changes as well.

And Jay Parkinson advocates the use of design to transform:

"Going to the doctor, having routine surgery, buying bulk medications online -- all could be radically reinvented with the application of one type of medicine: designed disruptive innovation. Combining the principles of disruptive innovation with design thinking is exactly what health care in America needs. We need to disrupt the current business model of health-care delivery. And we need these disruptions to be designed experiences that are consumer-focused."

Additional models have been proposed by designers, including a model described by Matthew Diamonti, UX Director at the Mayo Clinic -- a model based on the behavior of spiders rather than the current model that is based on the behavior of bees; I'll leave it to the reader to investigate the intriguing details of that proposal further.

Other efforts are underway or have been proposed, but I consider many of them -- such as improving the design of waiting rooms and billing doctors for time patients are forced to spend sitting in them beyond appointed meeting times -- too much about "putting lipstick on the pig." One additional significant effort underway is the replacement of paper patient records with electronic records; that huge effort has been plagued with all sorts of problems due in no minor part to designs that take into consideration the behavior and needs of neither the doctor nor the patient.

I've also made no reference to the growing number of medical apps and devices that have been developed to help people monitor their bodies and their behaviors. Though such apps and devices have received an enormous amount of attention and funding, I tend to agree with Jeff Benabio M.D. who has said:

A few days ago, David Shaywitz reported that a FutureMed extravaganza put on in Silicon Valley last week was not much more than "a celebration of technology for its own sake." And Jay Parkinson, focusing on body data tracking devices, has stated:

"I personally believe that body data tracking is just hype for many reasons. The amount of money these companies are raising is way out of proportion to actual benefit to society."

But controversy isn't new to Jay. When he began his web-facilitated, house call practice described above, Jay was investigated by the New York State Office of Professional Conduct.

"I knew I had plenty of haters given the heated debate in the medical blogs and news stories about my practice. I need to point out that I never once received any criticism from patients or the general public. The only criticism I've ever received came from within the medical community. So someone, somewhere called the state and complained...and given the online discussion I can only assume the complaint was made by a doctor."

The stage 3 tribe known as medical doctors has attempted to undercut other efforts as well. For example, some doctors now ask patients to sign "mutual privacy agreements" that transfer ownership of any public commentary the patients might write so that the doctors can censor their patient reviews if so desired. Of course, taking steps to have a nurse fired and lose her license to practice for educating a patient, as mentioned above, is another example of behavior against patient education and empowerment.

As I've written in an earlier blog posting, I've made the committment to doing what I can so that others will not have to experience the kind of hell that I was forced to experience when dealing with the U.S. healthcare system. I appeal to all readers to get involved at least to the point of becoming an e-patient. I also ask you to share with me your ideas as to what else can be done -- what all I might do -- in the effort to meet that committment.

As an attendee of Health 2.0 San Francisco 2011 tweeted:

The time is ripe for a healthcare revolution -- an Occupy Healthcare movement -- a patient experience transformation. As Saul Kaplan stated in a Harvard Business Review blog:

"We need a new health care system that ... is designed for patients to champion their own pathways to wellness."

Everyone can play a role in achieving that change.


A duplicate of this posting appears in my professional blog.