2013 Resolutions for Hospitals: “Let’s Go, People!”

US Surgeon General Regina Benjamin, MD

 The end of the year is jammed with big medical conferences, aimed at improving healthcare quality. In Baltimore last month, I and a small tribe of patient advocates were thrilled to join CMS (the Center for Medicare and Medicaid Services), the Partnership for Patients, several other sponsors and nearly 1,300 “thought leaders in American health care quality” for QualityNet 2012.

So what were the opportunities/marching orders we came up with for 2013?

1)    Patients can help fix health care. Use them.

2)    Hospital C-suite types are still worried disclosing medical harm to patients will lead to lawsuits. Please get over it. It just isn’t so.

3)    Many hospitals (you know who you are) aren’t trying hard enough to reach performance goals (PfP goals are to reduce hospital readmissions by 20 % and healthcare-acquired conditions by 40 % by the end of 2013). You need to step up. If you can’t do it, one patient advocate has a simple solution for you. (It’s at the end of this post).

Sitting in the audience, I loved much of what I heard. There was Jessie Gruman, a multiple cancer survivor, offering her take on the big buzz-phrase in health care: “patient engagement”. As she rightly points out, the millions of dollars invested in her various treatments are dependent on HER engaging to find the right doctors, choose the best treatments, manage surgeries, drug treatment and care delivery. Never mind the medical, lifestyle, emotional and spiritual gauntlet she has to manage in between. In the absence of electronic health records (still not ready for prime time in many respects), the smooth operation and integration of one’s care REQUIRES the patient to engage. In other words, patient engagement isn’t a pleasing option, like sour cream with your baked potato. Without patient engagement, the potato doesn’t get cooked.

Few people have earned their stripes on this topic as much as Gruman. Founder and President of the non-profit Center for Advancing Health, she’s beat back five life-threatening illnesses, including stomach cancer diagnosed just two years ago.

Three of her most Tweet-worthy points:

1. “We (patients) know mostly nothing about health care. We don't want to know. We approach on a need-to-know basis.” (Gruman has 11 physicians she has to see twice a year, so she needs to know a lot). Not one physician, she says, has ever communicated with another. “This is not a good idea.”
   2. Despite all the hoopla over IT, “there is no ‘killer app’ that will make us [patients] engage”.
   3. “Engagement is not compliance". (Love that one.)

Virna Elly then told us what it was like to have lived with type 1 diabetes and chronic kidney disease for most of her life, and a successful kidney-pancreas transplant eleven years ago. “I was a Medicare and Medicaid beneficiary by age 32.” Her plea: “We need more than a line at the end of a conversation or pamphlet telling us to ‘ask questions’. We need time to process and absorb, then ask questions. Why don’t you ever ask ‘what do you think of the information we gave you’? Why don’t you follow up? You need to meet patients at their level, how they need [information], when they need it.”

Poised and articulate, business suits mostly covering their accumulated battle scars, these were just a couple of the well-chosen patient presenters whose presence, learnings and good sense  were warmly received by a receptive audience. By all means, let’s work on developing this partnership in 2013.

Tim McDonald of UIC talks "transparency"

Disclosure and Transparency are here to stay. Embrace it! We (patient advocates and providers) had a bunch of workshops during our three days in Baltimore. In the first few minutes, we’d brainstorm topics, after which we’d break into small “table discussions”. People could vote with their feet, joining the group and topic of their choice. At our standing-room-only table, a lively exchange on “patient engagement” proved how much work there is to do. A hospital CEO (by all accounts a very intelligent and well-meaning CEO) posed her concern: her hospital’s risk assessor continues to insist transparency and disclosure (coming clean to patients/family when a medical mistake is made) increases the risk of a lawsuit. NO NO NO!  This is a gross fallacy, perhaps perpetrated by the “ACME Risk Analyst Association” (I made it up, but you know what I mean) for their own (guess why) purposes.

The plea I’ve heard from patients echoes the findings of a bunch of studies: Often, all an injured patient and family may really want is to know what happened and why, perhaps an apology, and to receive a reasonable monetary award (see story on the Malizzo family, below). In an effort to achieve that, dozens of states have passed what are called “I’m Sorry” laws. They allow a physician to discuss openly an adverse outcome with a patient and express empathy. The University of Michigan Health System pioneered this approach back in 2001. When medical harm happens (and it does, everywhere), they investigate, notify patients, and offer compensation when employees are found at fault. The health system says it’s had fewer lawsuits, lower liability costs and faster resolution of medical-error cases since the policy was implemented.

Yay! Results! Some HENS (Hospital Engagement Networks, contracted to deliver on PfP results) and hospitals presented data that show they are doing good work, able to put aside conflicting agendas to work together and deliver results that save lives. How great is that? We applaud the hard work it takes and celebrate this success. Not just for the lives saved, but because it proves it can be done.

There was much celebration of successfully instituting “hard stops” to early elective deliveries (EEDs, in the medical acronym lexicon). A good thing indeed, but described in some circles as “low-hanging fruit”. (No disrespect, but simply ending elective deliveries prior to 39 weeks’ gestation doesn't require as much teamwork, nuance or organizational culture change as, say, making sure patients leave the hospital prepared and equipped to manage their care post-discharge.)

Fact is, as some grumble, some hospitals are resisting the PfP objectives. They have no results to show. They haven’t joined the “patient engagement” bandwagon, either too frozen, too uncertain, or worse, too arrogant to dig in and do the work. Heck, they’re hoping the bandwagon will go the way of the stage coach: a product of its time, but merely a transient chapter in history. (And what, exactly, happens when the PfP contract expires at the end of 2013? No one is sure.)

Barb & Bob Malizzo at QualityNet2012

Bob and Barb Malizzo of Hobart, Indiana, whose presentation ended the conference, have a few words in response to this attitude. Their moral authority comes at a terrible price. Their 39-year-old daughter Michelle, mother of two little children, had entered the hospital in 2008 for a routine liver stent replacement and suffered brain damage from an anesthesia overdose. She was put on life support, and died nine days later. In the wake of this devastating event, the hospital’s chief quality officer, Tim McDonald, did the best he could do. He told the Malizzos he’d find out what happened, did so, disclosed it to them, apologized, changed hospital policy around quality control during anesthesia, and worked to make them whole again. Today, the Malizzos are part of the hospital’s quality improvement efforts. They not only weigh in on cases at the same hospital where their daughter died, but travel to conferences with McDonald and present “the layman’s perspective”.

I sat with Bob and Barb at the end of day two of the conference. They are a warm, sincere and engaging couple, though their grief over losing their daughter is never more than a word or gesture away. “What did you think?” Bob asked me of the last two days’ events. “Well”, I began, “it’s great that the patient perspective is such a big part of this.” Bob looked pointedly at me. “What about the hospitals that aren’t stepping up?” he said. “For every one that’s working on getting better, a bunch of ‘em are dragging their feet.”

I looked at him. “You have a point.” It was clear he had something in mind. “You’ve been a business owner,” I said. “You’ve even been mayor of your city. What would you do?”

He leaned in. “When people don’t perform, when they don’t do the job they’ve been hired to do, there’s only one way to go.” He beckoned me closer. “You fire their ass.”

Ah yes, there's that. 

Is this little-mentioned option really an option? Do you want the board of your hospital considering such decisive measures? If so, maybe you should let them know.

Or-- what are your best ideas to achieve the PfP goals within the next twelve—now eleven-plus-- months?

Because the clock, as they say, is ticking.

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It's here: Drafting National Agenda for Patient Advocates

Cross-posting with Regina Holliday...an invitation. Please comment and share!

Dear patient advocates, e-patients and caregivers,

We’re reaching out with an invitation to design a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time to change the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do say that no one’s listening to? What  are you doing that works, that you could share with others? Please read below and add your 2 cents – or your 73. 

Regina Holliday painting: will all groups
pitch in their ideas and help?

The more of us take part, the more we can accomplish and more impact we can have. Thanks!

Background:

In an effort to stem the tide of unacceptable medical harm, the federal government’s Partnership for Patients initiative seeks to reduce healthcare-acquired conditions by 40 % and 30-day re-admission rates by 20 % by 2013. In pursuing this admirable goal, and as part of the group’s contractual mandate, the PfP has been reaching out to obtain the input of patient and family representatives. Additional healthcare improvement initiatives are in process from a variety of institutional, government, consumer and private stakeholders, some of which are funded by $1 billion in Medicare Innovation grants. 

In an effort to ensure consistent interoperability and accessible information about our care, the folks in consumer engagement at the office of National Coordinator of Health Information Technology are working to involve the patient voice in patient data access.

The patient advocate community, meantime, is a passionate but fractured group of “one-offs”, consisting largely of individuals and small organizations scattered throughout the nation. Some work on legislation, others on a variety of issues such as hospital-acquired infections, informed consent, and implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Fueled in many cases by the pain of a personal loss to medical harm, many of us toil in obscurity, under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities.

We in the advocate community applaud the recent first steps toward sponsoring our participation in the national conversation about quality improvement. Examples are the payment of some advocates for travel expenses to attend critical meetings of the PfP, and in the case of the October PCORI conference, the providing of travel expenses and a stipend. However the inclusion of the patient voice remains in a tentative stage. Without more widespread and robust inclusion of the patient/advocate voice, from the waiting room to the boardroom, the true “partnership” between patients and providers will remain of small benefit to either.  

Frankly, despite the best intentions of groups working “to include us”, we are impatient. We recognize that these provider groups are operating with the most sincere of intentions, and may be working under contractual and/or cultural constraints. However we patients are not. The same autonomy and lack of affiliation that has proved frustrating economically  allows us to be nimble, quick, and potentially more effective because of it. And though we have so far lacked organization and unified focus, we recognize how achieving these traits will elevate our capacity and rightful status as an equal partner in forging the future of health care.

The Partnership “With” Patients Summit in Kansas City in September 2012 offered a promising glimpse of how patient advocates can effectively catalyze the pace of this change. The PWP brought together a range of participants, including patients, providers, thought leaders and industry representatives, to network and share best practices.  Conceived, promoted and funded though the tools of social media, the Summit also underscored the promise of social media to capture, convey and distill forward-thinking ideas from a broad range of people committed to the same goals. We who attended saw how exciting it would be through technology and social media to “crowd-source” a focused, common, national patient advocate agenda —taking contributions from the “many” that artfully create a “whole”—an agenda that can be embraced by the widest possible group. 

One side of whiteboad filled in by participants
during Partrnership With Patients event in KC

The seeds of this concept – and some early thoughts around structure and specific goals—were in fact “crowd-sourced” during an open brainstorming session at the PWP Summit, facilitated by Summit organizer Regina Holliday and Pat Mastors. It is the intention of post to present these ideas to “kickstart” discussion, suggest how we might organize them into survey questions, gather the widest possible input nationally from the patient advocate community, and craft a working agenda around which all of us can rally.

Your activities will not be limited by the agenda that’s ultimately produced. All of us will continue to pursue our respective endeavors and opportunities to have impact. 

Those unfamiliar with social media will not be left out of contributing. Steps are already being undertaken to insure patient voices from all demographics and geographies are included.

Please note this is a volunteer effort! We need your help…and hope you can be patient with our mistakes.

PWP Notes: (I’ve taken some liberty with order to organize it better)

1)    We need a name that’s inclusive of Patient/Advocates/Families and their representatives, one that’s used consistently by all in speeches, blog posts, conferences and conversations. Ideas? Do we need our own acronym? Or do we find acronyms problematic?

2)    We need bullet points and consistency of message.  Perhaps 3-5 priorities for year 1, others for year 2, etc. We build on progress. Success is more actionable with well-defined priorities.

3)    Potential suggestions of these 5 priorities:

a.    Cleanliness. The right to see hands cleaned by every person who touches him/her. A request to clean hands will be supported.

b.    Access to patient/clinical data.  We should always have access to physican’s notes, test results, etc. (SPM “Open Notes” study results support physician buy-in). This will also lead to shared decision-making.

c.     Dignity. A patient’s physical privacy will be respected. Care providers will introduce themselves by name. If the patient is conscious, a procedure will be explained and permission to proceed granted before being performed.

d.    Transparency. Cost, care and quality metrics (frequency of procedure performed, infection rate, et.) should be publicly disclosed. We should be supported in asking questions.

4)    How do you get “harmed patients” in the room? A concern of the group is that often the patient “representative” on a panel or a conference is someone who’s worked with harmed patients, or written about them, but hasn’t personally experienced being a patient with no medical connections or colleagues. There needs to be transparency (and formal disclosure? re: who is representing the patient voice in every setting.) Ideas?

5)    Funding, time parity and stipends. How do patient advocates get compensated for their time and expertise? Is it reasonable to let the free market create value? Should there be a more concerted (formal and funded) effort to identify and vet participants? Who’s responsible for creating a new job category? Who should pay and how?

6)    How do we develop/deploy patient “market power”?

a.    A “virtual collage” with faces of every advocate (or lost loved one) the group represents could be powerful (think virtual “AIDs quilt”). Can this be made into a poster or other piece of collateral that member advocates could print off and display at public meetings, a visual affirmation that “I represent thousands?”

b.    Should we host an online petition to represent our numbers? 

c.    Once agenda is agreed upon, do we want a social cause “icon” we can wear like a wrist band or lapel pin?)

7)    Should we pursue a national project, like a “Stay Well” card for patients that includes bleach wipes (effective in killing C.diff spores)? Or encourage florists to provide flowers and bleach wipes? Should we pursue a private sector partnership to accomplish this? (though this would likely happen down the road, I’ve reached out to the Clorox Company for a conversation). Are there other potential projects?

A thought I’d like to add…AHRQ is pursuing a patient reporting website to be built by the Rand Corporation, where a we could report an instance of medical harm…a wonderful potential driver of quality improvement.

            I think of advocates like Helen Haskell, and the panic of feeling in real time that you’re losing someone you love, and that no one will listen. I suggest a “panic button” on a poster on the wall in each patient’s room. It would have a phone app and a toll-free number connected to this reporting database. These reports would be anonymous but you’d have to agree to submit a full report later. Maybe each hospital could choose to assign a person who’d pick up on such calls in real time. Or maybe to start, the data just accumulates to flag dangerous hospitals/units/providers and identify patterns. But it would absolutely create more patient-driven and better accountability/transparency of patient harm.

Next Steps: We’ll be creating a survey through Traitwise.com (Regina got them to help —yay!) to begin capturing your thoughts and get to the next level of organization. In the meantime some possible questions are below. Please feel free to respond with general thoughts in the comments field.

Possible, sample questions:

1)    Do you want to be part of a national patient advocacy group?

2)    What should this group be called? (choices a,b,c?)

3)    Please rank national actions priorities (rate 1 through 5, 1 being do not support and 5 being you support this item strongly)

Cleanliness

hand washing campaign, bleach wipe campaign, no long sleeved uniforms or lab coats, just say no to long ties in the care setting, etc

Data access

Demand access to your data by USB, CD or download, etc?

Dignity

Photo ID for patients/caregivers and medical providers, Medical records with visual avatars, etc?

 

Transparency

Yelp for providers, resources like faircare, HCHAPS awareness and hospitalcompare.gov etc?

4)    How important is it to ensure patient participation is included in every meeting on policy or process? (scale 1-10)

5)    Should representatives be vetted by some process? By whom? (choices) By a metric? Klout Score/Google Results/Certification Process combined?

6)    Should they be paid? By whom? (choices)

7)    How much time can you devote to this cause in tandem with your own work? (choices)

8)    What specific skill or work can you (and are you willing to) offer to this group? (Tweeting, blogging, hospital board experience, training, speaking, etc).

9)    How much do funding limitations impact your capacity to offer the above?

10)  If funding weren’t an issue, what percent of your time would you be wiling/able to devote to a national patient advocacy agenda you believed in?

We look forward to hearing from you! Please post your ideas in the comment section below, or at ReginaHolliday.blogspot.com

-Pat Mastors and Regina Holliday

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Medstartr: Where The "Crazies" Are

Entrepreneurs in general are known to share five “C” traits: Commitment, Confidence, Creativity, Courage and Collaboration.

But in medical entrepreneurship, the other “C” might be for "Crazy". There are so many disconnects, agendas, and bureaucracies in health care, you'd have to be nuts to go there, right? But  when an unfortunate medical event hits home, you're driven by the crazy notion you can make it better for patients. 

Look at some of the folks posting projects on Medstartr.com, a brand new crowd funding platform where medical entrepreneurs pitch for funding from the world at large:

•  Regina Holliday, young art teacher and mother of two who lost her husband to kidney cancer. She was frustrated at the pace of government efforts to include patient voices in policy-making. Within a couple of months she’d crowd-funded the first-ever national conference on partnering with patients. It took place in Kansas City within three months of the project’s posting.
•  Two sisters who lost their mom to breast cancer and got mastectomies (after learning they had the breast cancer gene too) couldn’t find a bra that fit their newly reconstructed bodies. So they’re creating one that makes them feel as comfortable as any dual-breasted woman.
•  Me. After losing my father in the hospital to complications of a C.diff infection, and seeing how unprepared and ill-equipped patients are to engage in their care and help keep themselves safe from infection, I created a “portable patient advocate” that clips on the bed rail called a Patient Pod. My hope is to get them in the hands of patients sooner rather than later.

As Florence Nightingale said, “Apprehension, uncertainty, waiting, expectation, fear of surprise, do a patient more harm than any exertion.” Who would have thought  I'd wake up every day thinking along the same lines as Florence Nightingale? But the truth is, when you have a devastating personal experience, you can't help but imagine the next person walking in your shoes, and want that person to feel comforted, safe and in control when you or your loved one did not.

Ken Schwartz learned this. He was a lawyer working in health care. forty years old and married with a young son when he got devastating news out of the blue: advanced lung cancer. He’d smoked an occasional cigarette in college and law school, but he had been living a smoke-free, healthy lifestyle since then. As he wrote in the Boston Globe, early on in the diagnosis and treatment process:

 …the nurse was cool and brusque, as if I were just another faceless patient. But once the interview began, and I told her that I had just learned that I probably had advanced lung cancer, she softened, took my hand, and asked how I was doing. We talked about my two-year-old son, Ben, and she mentioned that her nephew was named Ben. By the end of our conversation, she was wiping tears from her eyes and saying that while she normally was not on the surgical floor, she would come see me before the surgery. Sure enough, the following day, while I was waiting to be wheeled into surgery, she came by, held my hand, and, with moist eyes, wished me luck…

Ken Schwartz

      This small gesture was powerful; my apprehension gave way to a much-needed moment of calm. Looking back, I realize that in a high-volume setting, the high-pressure atmosphere tends to stifle a caregiver’s inherent compassion and humanity. But the briefest pause in the frenetic pace can bring out the best in a caregiver, and do much for a terrified patient…I cannot emphasize enough how meaningful it was to me when caregivers revealed something about themselves that made a personal connection to my plight. It made me feel much less lonely. The rulebooks, I’m sure, frown on such intimate engagement between caregiver and patient. But maybe it’s time to rewrite them.[i]

Ken Schwartz died of lung cancer less than a year after his diagnosis. But his legacy lives on in the foundation he started shortly before his death, the Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital. Dedicated to strengthening the relationships between patients and caregivers, it also stands as a poignant testament to the power of the human touch, and human kindness, in affirming our basic humanity.

The projects on Medstartr.com above reflect and affirm this basic humanity. Others you'll find there--IT solutions and technologies, for instance-- also serve this goal. We can’t ensure a nurse is always there to comfort us, or a physician has the time to really listen, but solutions that carve out cost efficiencies, inform patients, cut wait times, and make critical information easier to find just might free up more bandwidth for our providers to focus more on the human needs of the person in front of them. That could do a lot to reduce a patient’s apprehension, uncertainty and fear.

Florence Nightingale would certainly approve. And if  Medstartr projects had existed in her day, she’d probably find a way to fund them. 

---

[i] Ken Schwartz, “A Patient’s Story” Boston Globe Magazine, July 16, 1995.

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National Agenda for Patient Advocates?

Coming soon (fingers crossed): an invitation in your email, favorite social media site, and posted on the wall where you hang out. It will include survey questions asking you where we can go together as patient advocates. It begins: "We’re reaching out with an invitation to create a national patient agenda…created by the best, brightest, most committed and passionate doers and thinkers among us. That means you!

Who are we? Patients/advocates/activists/caregivers like you. We sense it is the time for change in the future of healthcare quality and WE WANT TO BE A BIGGER PART OF IT. What ideas to you have to fix health care? What do you keep saying that no one’s listening to? What  are you doing that works, that you could share with others, if only there was a way to do it, or a way to get paid for the time involved in sharing it? Please read the below and add your 2 cents – or more. The more of us take part, the more we can accomplish and more impact we can have..." 

Partnership For Patients Retreat September 20, 2012, Baltimore, MD
(That's me in blue, behind Regina Holliday's painting) Second row, third from
left is Teresa Titus-Howard, who joined us the next day in Kansas City.

This post is a preview "heads-up", with a little background so you'll know where it came from.  
Where did it start? With the federal Partnership For Patients. (On the left is a photo of the core work group.) It developed further at the Partnership WITH Patients (a new grassroots organization) Summit in September.

Partnership FOR Patients work group discussing
"The Moral Imperative" of preventing harm, Sept. 20, 2012

Both groups are working on common goals-- to reduce preventable harm to patients, and to include the voices of patients and families in policy-making and events. The former is a federally funded organization. The latter was an off-shoot of the first. The former has funding and smarts to be effective. It's been working a plan to reduce medical harm by 40 %, and 30-day hospital re-admissions by 20 %, by 2013. IT IS HARD and SLOW WORK getting 5 or 6 thousand hospitals to row in the same direction, especially since government agencies must operate in a climate of committees, asking permission, forms in triplicate, crossing T's and dotting I's. They're trying to bring more and more patient/family voices into the mix, but it's slow going (see above about committee work). The people involved in PfP are wonderful. Committed, smart...the best we could ask for. But "nimble" and "agile" they can't be. By culture or by contract, it's their lot, working for the government (they know it; they wish it weren't so).

Frankly, we patient advocates are impatient. We feel we can offer a lot more, faster. The problem is the patient advocate community, while passionate and committed, is largely a fractured group of “one-offs”. We're made up mostly of individuals and small organizations scattered throughout the nation. We work on different issues: legislation, hospital-acquired infections, informed consent, implantable medical devices. We are all committed to improving the quality of care and the underlying culture that drives it, but have so far lacked the tools and a unified voice. Most of us were co-opted into this work by the loss of someone we love. We toil in obscurity, largely under-funded and without benefit of professional organizations or employers that sponsor our networking, learning, and travel opportunities. It's also hard for organizations to interact with us when "us" is so loosely defined. How can we tap our own numbers and collective passions, talents and energies? How can we inject ourselves usefully into this important work?

The "Partnership With Patients" Summit was evidence that our greatest asset in delivering on these goals might be social media. The Summit itself was conceived, planned, and executed using the tools of social media (Facebook, Twitter, Blogs) to get the word out, structure the event and fund it. An eclectic bunch of 70 or so patient advocates, providers and others from the full spectrum of patient advocacy carved out the time and funding to attend. The conference was produced largely by a tireless powerhouse, "Arts Advocate" Regina Holliday of Washington, DC. (For those who don't know her, Regina lost her husband Fred in 2009 to kidney cancer, leaving her with two little boys and a burning frustration at being denied Fred's medical records in time to advocate for him before he died. She painted a mural depicting this frustration and now presents, paints and speaks worldwide for patient advocacy.) As she writes about the Summit in her blog "We proved it was possible for a loose confederation of patients to gather and organize with little time and little funding.  We were nimble. Each benefited from the expertise of the other. Most of all we proved this could be done.

"Remember where this saga began?", she writes. " On May 22nd , we were told there was no funding to gather patients to talk about goals of the Partnership for Patients campaign.  Pat Mastors and I thought we had to do something to change this.  Kathy Nicholls helped create a website and we began to plan.   In the months hence we worked with the team from Weber-Shandwick [the PfP contracting vendor] and the Partnership for Patients team from CMS to open up communication between an ever larger group of patients.  Representatives were able to come to our Kansas City summit from both Weber-Shandwick and CMS." 

The PWP Summit also showed the power of new "crowd-funding" web platform Medstartr.com to overcome funding challenges. Regina posted a project there, offering shout-outs on Twitter and Facebook, plus her paintings, as rewards to backers. The project was funded at 219%, raising $10,948.00. HealthTechHatch and the Society for Participatory Medicine also hosted a travel fund, raising another $6,0000-plus dollars to provide 9 travel scholarships. Cerner donated the conference space.

Regina Holliday, Pat Mastors

The "Un-conference": great ideas, great energy

In the halls at PWP- facing us in the center is 
Teresa Titus Howard, 
Deputy Group Director, 
CMS Innovation Center

My "Ignite" Presentation at 
PWP Summit.
(Note to self: don't wear black 
when standing 
in front of a black curtain)

At the Summit, more than a dozen of us (including e-Patient Dave deBronkart, Society for Participatory Medicine President-elect Michael Millenson and others) shared "Ignite" presentations (20 slides, 5 minutes). It was exhilarating to be on stage to present our views on how the patient/family voice can improve health care (at most events, we're lucky to be in the audience.) In other sessions, attendees more experienced with public speaking and using social media tutored others. An "un-conference" began in one room with attendees brainstorming solution to given topics; we immediately broke into small groups based on like passions. We came and went as the dialogue compelled us. There was not a single "death by PowerPoint". 



Meet-ups in hallways, restaurants and lobbies turned into information exchanges, friendships, collaborations and lessons in using social media. And everywhere on the backs of jackets there were paintings from the "Walking Gallery", each of which tells a unique story of the wearer's (often unfortunate) interaction with the medical system. Regina painted most of these herself (including several in the hotel the evening before the conference started). Though we didn't need them quite as much in this crowd of peers, they present  a "face" to the struggles of our advocacy and a tribute to those we've lost.

Jackets from the "Walking Gallery"

One page of white board takeaways

On the last day of the Summit, Regina and I hosted a session on the future of patient advocacy. What could we, should we do, together? We recorded the crowd's ideas on a white board. There was overwhelming support for the concept of developing a unified agenda. We took photos of the white boards and are working off of them to produce the survey we will ultimately bring to you. 

So what do you say? What do you think about "crowd sourcing" a focused agenda for the patient advocate community? Would you want to be part of it? Would you help?

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Hiking & Hospitals: "Like a Box of Chocolates..."

A chance encounter on the Trail
in Pennsylvania

Nick & Jess at Springer Mountain
outside Atlanta, starting their 2,149-mile hike.

"...you never know what you're gonna get." 
        --Forrest Gump
                                                
In March 2012, our oldest kids, Nick and Jess, embarked

The stuff that went into Nick's pack

on a 2,149-mile through-hike of the Appalachian Trail.  Nick had spent months researching how to have the best Trail experience. With painstaking attention, he identified and assembled just the right tools to handle rain, blisters, navigation, food, first aid, cold, heat, and the occasional bear or rattlesnake. Thankfully, hiking the AT is a pretty safe undertaking. A death on the Trail is rare enough to be big news. No doubt one reason is that most hikers follow the Boy Scout motto: “be prepared.”

In hospitals, nearly three hundred people die every day from infections they didn’t come in with (including my father, in 2006). Thousands more die from medical error. So here's the question: before entering the hospital environment, what kind of preparation would you do? What tools would you bring?

"Come on," you say, "I'm the patient. That's not my job." True. But we wear seat belts in planes, and life vests on boats. Because things happen. It's the same in hospitals. Only worse.

The people who provide us with health care have an arsenal of "tools" proven to prevent these deaths, like being faithful about using good hand hygiene, checklists and contact precautions (to guard against the spread on infection). But they don't always use them. Why? Sometimes our caregivers are busy. Or they forget. The real problem? Pretending that human beings can practice medicine without mistake. They can't...no more than a pilot can be expected to remember every pre-flight detail without a checklist, or an Olympic gymnast can stick the landing every single time. Perpetuating the myth of perfection in medical care--defined as not doing the stuff we know works--is what one reporter described to me as "willful ignorance". 

Last week I was at a meeting involving the federal Partnership for Patients in Washington, DC. The room was filled with folks from best-intentioned hospital groups and other stakeholders who'd signed on to spearhead innovation in "patient-centered care". One at a time, they took the podium to report their successes (impressive) and challenges (substantial). They spoke of "tool kits" nurses and doctors use that ensure optimum care, and "bundles" (practices combined with tools, like those for proper IV insertion). These tools and bundles standardize routine tasks, and reduce variables that can make patient care unsafe. At the end, I couldn't help but ask "where's the "bundle" and "toolkit" for patients to use when they're stuck in that bed? Where is the tip list of how their own behaviors can impact their care? Where's the education that tells them not to touch their mouth with unclean hands, because that's one way they can get a C.diff infection? Where's the hand cleaner at the bedside? The notepad and pen for when the doctor explains test results?"

Susan Frampton of the The Planetree Hospital system stepped right up. (If you've never heard of Plantree hospitals, think beautiful, healing environments where the patient and family are also the core of a team.) Susan pointed out that there are lots of tips and lists available to patients and providers free on their website. Then a woman from The Leapfrog Group (a big health care quality consultancy) came up to me and told me Leapfrog has a bunch of packets with hand sanitizer, notepads and pens just waiting for distribution. They're not quite sure how to get them to patients. (I'll be following up and will let you know how to get them).

The bed table holds your personal "world" in the hospital.
What tools should you have with you?

Meantime what's a patient to do TODAY? 

Here's a radical thought: it's time for us patients to step up. In addition to researching your own medical condition or diagnosis (do I even have to mention that?), read up on hospital-acquired infections and medical harm. Ask if the tools mentioned above (hand cleaner at your bedside, notepad and pen, handouts about infection risk, etc.) are provided in your hospital or nursing home. They are? Yay! If they're not, well, as in any business, if customers request an item often enough, it may just start appearing. Until that happens, bring the stuff yourself.  Make sure the patient you care about has access to these items (that they don't end up in her water basin, moved across the room). Make sure you have your cell phone and charger with you AND an extension cord. Don't share magazines and books with other patients--and don't touch theirs--unless they've been thoroughly wiped down (dangerous germs linger on these surfaces).  Be vigilant about making sure the bed table doesn't get rolled away from you, because everything precious to you could get moved out of reach in an instant. Don't leave any personal item on the dinner tray. Many patients find that's how their stuff ends up thrown away in the kitchen trash. 

August 3, 2012
2,100+ miles later, Nick reaches Mt. Katahdin in Maine
(Jess is a few weeks behind, hiking with friends).

Will this solve every problem in the hospital? Not by a long shot. But it gives you as a patient a role to play in your care, and a degree of control in a place where too often you have so little. It will bring your eyes, ears and voice into the equation. It might just make things safer for all patients in the long run. 

Even in state-of-the-art hospitals, with the best caregivers, "you never know what you're gonna get". Why leave things to chance? As my kids learned trudging through snow, swamps, lightning and downpours, bad drinking water and tangled lines, the right tool at the right time can make a big difference.

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