A Fix for Fractured Family Syndrome

Today, in the spirit of "holistic" health being about more than medicine and a lot about spirit, I offer our family's answer to "fractured family syndrome". Try it; it won't hurt.

Back when our youngest was seven years old, we were as crazed as any two-parent family who worked outside the home while raising three kids. Mornings were such a mad dash I actually showed up to work once wearing two different-colored shoes. Just getting dinner on the table was an Olympic event. Worse, our middle child, while she adored her big brother, had taken a distinct dislike to her little sister, and relished every opportunity to show it. For all the times we caught her in an eye-roll or a mean word, I knew there were dozens of snarky moments we missed.

The holidays loomed, filled with obligations, to-do lists, and long lines at the post office. 

The only thing missing was any spirit of Christmas.

One day, shortly after rescuing the guinea pig from the heating vent where she'd been chased by the dog (don’t ask), I called everyone to the kitchen. Adopting my best don’t-mess-with-me “mommy” voice, I told them this Christmas we were going to do something new. Each of us would write a letter to our family. We would say what we loved about each and every member of the family. No negative stuff (sternly intercepting older daughter’s furtive glance at little sister). We would read the letters out loud on Christmas Eve, after a dinner we would all pitch in to cook together.

The moaning began right away, and didn’t stop. For the next two weeks I’d ask in a steel-hand-in-velvet-glove kind of way “how’s that Christmas letter coming along?” Sagging shoulders, massive sighs and moaning rose to a new art form. The kids probably wouldn’t have followed through except for their dad. Jim's Greek ancestors knew a thing or two about standing tough and being obeyed. (Which was pretty funny, considering privately he grumbled more than anyone).

The youngest skipped around happily, eager to share what she’d written. With her babysitter’s help, she had dashed off her letter a week before Christmas. My letter was done early too. (Gotta say, just thinking of what I would write to these four people put a smile on my face, through what would normally have been the most stressful days of the year.)

December 24^th began the final countdown. Jim (fortified with a smidge of Irish whiskey) and the older two kids were in separate rooms, finishing up a letter they were by now convinced would be conspicuous by its absence.

We sat at the dining table, with white tablecloth, candlelight, the “nice” dishes, the works. In the middle of the table sat a small pile of envelopes. Christmas music played softly. The logs in the fireplace crackled and settled. After dessert we cleared the table, leaving only candles and the envelopes. The youngest, invited to begin, grabbed hers from the pile, took out her letter, and proudly read what she loved about her sister, her brother, her mom, and her dad. Her sister went next, speaking into a suddenly profound silence that arose from a fear we'd miss hearing nice things about ourselves from the people who knew us best. By the time mom and dad read their letters, smiles had become tears.

The next year it took less convincing to get everyone to write their letters. As the kids grew, and their writing skills and life experiences expanded, they even got a little competitive. Whose letter would be the funniest? The cleverest? Which would make mom cry the hardest? There was the year our outwardly tough-and-capable middle one told us about the struggles she was having with friends at school. The time our youngest told us how powerfully traveling made her appreciate things about home. The year the oldest came home from college having just lost his friend to a hit-and-run driver. When his turn came to read, his voice dissolved as tears flowed. He let us in on a deep pain I think he would have otherwise worked to “control”. How must it have felt to have his whole family stand to wordlessly embrace him?

We don’t get to choose what bad thing in life might befall us. Tomorrow is never a promise. It's one reason I love our Christmas Eve ritual. Once a year at least, I know I've said all the things I “wished I would have said”.

I now have a box of letters going back 14 years. Our daughters today could not be closer. I wonder what role those letters have played. Some day I will put all the letters together, in order, a formal chronicle of a family growing up together and figuring things out along the way.

Or maybe I’ll just keep them in the box. There’s plenty room for more.

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

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.

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?

Patient Advocates - Where Do We Fit?

A handful of us patient advocates from Northeast Voices for Error Reduction are just back from this year’s Maine Patient Safety Academy. It was a day-long series of seminars and presentations. Topics ranged from engaging physicians in patient safety, to preventing patient falls, to the waning effectiveness of antibiotics. About 150 medical folks attended from all over the state. There were nine of us patient advocates.

Christian John Lillis of the Peggy Lillis Memorial Foundation
(PeggyFoundation.org) speaks about losing his 56-year-old mother to
C-diff infection 6 days after she took antibiotics for a dental visit

We were invited after one of us, retired RN Kathy Day from Bangor (who lost her father to a MRSA infection) asked organizers if we could take part. She'd attended last year and felt we could learn from each other. Consumers Union (a branch of Consumer Reports) Safe Patient Project supplied travel funds. We all re-arranged our schedules and drove hundreds of miles to Portland, from as far away as Buffalo. (Yes, we're that eager to help drive the conversation about involving patients in their care: “Nothing about us, without us”.)

The invitation did not necessarily come with the certainty that everyone (or even the majority) of attendees from the medical profession would be enlightened about where we patient advocates fit in, what we can offer, or how to approach us. Like newly-made acquaintances invited to a longstanding family reunion, there was, if not wariness, a certain awkwardness, seen when speakers would preface remarks by asking for a show of hands who was in the audience. “Physicians? RNs? PTs? OTs? Social Workers?” More than once, someone in our group piped in (when it was apparent they wouldn’t ask), “Patient Advocates”? (Since this was our first time attending, I'm thinking this was understandable.)

I found the stage play at the end of the program, with actors interacting as various members of the medical team recreating actual events, the most enlightening presentation of all. This is where the true degree of dysfunction and poor communication within medical “teams” was brought to light. Keynote speaker Suzanne Gordon, author of First Do Less Harm produced this eye-opening look at how staff who now operate in parallel but separate silos need better “team intelligence” – training to better communicate, trust, and support each other (what a concept!).  Though seeing the full extent of the problem was disturbing, I always feel it’s better to know the enemy. The “enemy” is self-centeredness, poor communication, lack of mutual respect, and not believing others can learn or do better. This is what sabotages the best efforts of well-meaning clinicians and puts patients at risk. This is what we all have to combat every day…as a team. And it’s the patient advocate’s challenge to demonstrate that without incorporating the patient’s point of view, this team can never be complete.

The patient safety movement is like any wave of social change…from civil rights, to gender equality. It requires a change in an entrenched mindset and an acceptance of a group that had historically been seen as “other” to be thought of as "equal" (not in terms of training or role, but in terms of respect) within the culture. This movement needs both its noise-makers to push the envelope, and its conciliators who respond with exceeding patience in the face of comments made in ignorance (which, by definition, is uninformed). Emotions fuel responses. How can they not? We have lost people we love to medical harm. We are impatient. Others die every day, even as well-meaning people at summits and conferences talk about why, and how to fix it.

But let’s look at the positives from this event: we patient advocates were invited. We got to present a panel discussion. We were given a table in the lobby to display our books and projects. (Yes, literally, a seat at the table).

In the world of provider and patient/family engagement, the relationship between us is still in its nascent stages. We patient advocates, like medical professionals, have different life experiences, approaches and temperaments, and unique gifts to offer...but common goals. We need to get to know each other. Sometimes our interactions may be tentative, or clumsy, or less than they could be.  But each overture, each interaction offers us an opportunity to build trust, respect and relationships. 

Just like that newbie at the family reunion. If we work at it, maybe some day we won't be newbies any more.

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.