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