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. 

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[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.

Patient? Consumer? We Need a New Word

In the world of health care, as in most enterprises where we must interact with one another for mutual benefit,  we need words to describe one another. And the words we have for us people who use/need/want/ health care frankly don't cut the mustard. 

We need a new one.

The French gave us tasty food, the Statue of Liberty, and the wonderful phrase "le mot juste". Translated literally, it means "the exact word", invoked when a word fits a situation so precisely that angels sing. Suffice it to say, America is still searching for le mot juste to describe the patient/consumer/partner/person at the center of health care, and all its gnarly problems.

Why is "patient" not le mot juste? Because today I am a person, but tomorrow I could be a patient. Or today I am a patient, but please, please, tomorrow let me be just a person.

What's wrong with "consumer"? Most garishly, it speaks to a very one-way deal. You produce, I consume. The image that pops into my head is of Jabba the Hutt from Star Wars, resplendent in his slovenly girth, cackling obscenely as he tosses hapless, plaintive live creatures into his capacious gullet.

What about "partner"? Yes, this implies equal footing, equal contribution, equal investment, equal awareness, equal engagement...the "e-Patient" movement. A wonderful and worthy  community I urge everyone to join (at e-patients.net). But (sigh,) for your average Joe or Martha, we ain't there yet.

"Person"...ah, what an inclusive, important and utterly white bread word. A "person" is what the census bureau refers to as something like an actual living person. As a fan of AMC's The Walking Dead, I can assure you sometimes you have to be almost on top of someone before you know if they're an actual, viable person, or just a "walker".  When I think of the "persons" out there, vibrant, precious, irreplaceable human beings like my friend Wally who fixes my car, or Oprah Winfrey, or Aurora who cuts my hair, the word "person" is just so lame and lifeless. Like "digit". 

The medical world is fond of acronyms. I believe at last count there were 3.2 million acronyms for various agencies, diseases, medical websites and companies that will tow your car for parking in the wrong spot at the hospital. But maybe there's just one more acronym that would perfectly capture the (insert word for patient here) trying to figure out how to survive/pay for/understand/participate in/improve/partner with/find health care.

It would be a combination of
Patient
Consumer
Partner
Person

Maybe pacoparper?
Copay partner? (closer)
Perpaparcos?

My head hurts just thinking about it.

Maybe you can help me out here. Because, friends and fellow copay partners, paycoparpers or whomever you are, the Affordable Health Care act that the SUPCO (another acronym, used in newsrooms) passed is bringing in a new day. Whether that gets your knickers in a twist (another great borrowed phrase) or you're leaping with unbridled joy, there's important stuff you should really be paying attention to. Like looking out for medical harm and infections you get in the hospital that kill as many as 440,000 of us every year. (Imagine several planes crashing every day, and baby dolls and charred shoes littering Zuccotti Park. And Yosemite and the Great Smoky Mountains too.) It's not because most people that work in hospitals don't try really hard to stop it. But there's a whole lot going on in hospitals every day, with money changing hands in new ways, and lots of data entry to do and hand-offs and superbugs and paycoparpers who just lie back and expect to be fixed without their helping. 

But I digress.

We really need a new word. One that defines a whole new category of player in the game of health care. Those whose skin is oh-so-tightly in the game they would start shrieking like those clueless teenage girls in the Scream movies if they felt the pinch. Which they inevitably will, because pinches (defined in the Dictionary of Life as illness or accident to you or your favorite cousin) is what happens to humans.

We need a word for the kind of paycoparpers who hate to lose, or at least are aware they're knee-deep in a game where loss can be of the "ultimate" variety.

Please nominate your cool, new mot juste. The best new word wins a prize of my choosing.

Or maybe we should just ask the French.

Getting in on the "Action Plan"

There's an old Dutch saying my mother often shared: "No, you've got. Yes, you can get." So when I got word the Department of Health and Human Services was soliciting feedback on its Action Plan to Prevent Healthcare-Associated Infections, I channeled my eternal optimist to ask for a "yes" on stuff I believe matters a lot to patients. The letter below goes off to HHS by today's deadline (there's no Dutch saying for "getting important stuff done early"). There's also a bunch more I would say, but my college journalism professor had a saying, too: "Keep it short".

Your thoughts are welcome.

June 25, 2012

Department of Health and Human Services (HHS)

Office of Healthcare Quality

200 Independence Ave., SW., Room 711G

Washington, DC 20201

Attention: Draft National HAI AP

To whom it May Concern:

As the consumer representative since 2008 on the RI Department of Health’s Hospital-Acquired Infections (HAI) Subcommittee, an advisor to the CMS Partnership for Patients Patient-Family Engagement Network convened in May 2012, a person who lost her father to complications of an HAI (and worked to help pass two Rhode Island state laws enhancing patient safety), and an ardent supporter of patient engagement as a driver of quality improvement in health care, I am writing to provide expanded feedback on the draft National Action Plan to Prevent Healthcare-Associated Infections: Roadmap to Elimination (HAI AP).

I’m pleased that the HAI Subcommittee on which I serve has conveyed to you by separate correspondence (to which my signature is affixed) an endorsement of many of HHS’s HAI reduction initiatives, as well as areas of continuing challenge that would benefit from your office’s expedited direction and support. Areas where I feel your support and guidance are particularly needed include the following:

1) Resolve inconsistencies in the guidelines promulgated by the various federal agencies that govern or direct HAI reporting. Currently, the lack of clear mandates and guidelines leaves many if not most hospitals reporting the minimum required. Rhode Island has in fact gone beyond federally mandated reporting requirements and begun to voluntarily gather data on CDI (Clostridium difficile infections), which you are likely aware are “at their highest levels in history”, according to the CDC.[1] While RI should be commended for its pioneering stance in this regard, we on the Subcommittee continue to struggle with which data guidelines to use (we’ve spent more than a year just determining how “hospital-acquired” is defined).  Absent clear guidance, there is also concern that the resources we’re devoting to this effort will be moot once new federal directives are finally announced. These factors drag out the process, and compromise our capacity to deliver information that is meaningful and actionable to the public. The result is that most consumers remain unaware of the risks of HAI in healthcare settings, and so are unable to proactively partner in their care. This leaves nearly 300 people still dying each day in hospitals from HAIs that might have been prevented. 

2) Patient engagement is critical. In today’s complex, multitasking medical environment, human error is unavoidable. Patients and their advocates deserve care that acknowledges this truth. The increased incidence of C-diff infection, and of pan-resistant MDROs (infections resistant to all known antibiotic therapies) underscore the need for a “common mental model” of HAI prevention. The public must understand the risks, symptoms, course of disease, and behaviors s/he can undertake to mitigate the risk of contracting an HAI. (For instance, hospitalized patients might be told that to avoid C-diff infection they should never touch mouth or nose with unclean hands). Rhode Island has passed a law requiring distribution of such information to patients upon admission, or as soon after admission as possible (R.I.G.L. Chapter 23‐17.17). As we move toward implementation, this initiative may serve as a model for other states.

3) More resources are needed to research, prevent and combat HAIs in medical settings, reflecting the critical nature of this public health threat. I’ve become increasingly alarmed by comments at our Subcommittee meetings that new regulatory mandates divert time and attention from the patient’s bedside (“we’re spending too much time doing data entry”), and that in revenue-challenged times, infection control must fight a losing battle for resources. This concern is reflected in publications and medical blogs elsewhere in the nation. Your leadership in ensuring these resources are available is critical. “High tech” care is no substitute for “high-touch” care.

4) Take meaningful steps to synthesize the input of patients and families on patient engagement strategies. Though patient and family engagement is widely touted as a key goal of CMS and HHS to improve the quality of care, a true embracing of the patient/family perspective has yet to manifest through any federal entity. Case in point: I was among a group of patient advocates asked to participate in the kickoff meeting of the PfP Hospital Engagement Network, scheduled for late May 2012 in Washington, DC. Days before the event, we received an email that the meeting was cancelled, due to “budgetary restrictions on federal travel”. Instead, a two-hour webinar took its place, during which fifteen minutes was allotted to advocate input. Those of us listening via our computers (instead of our phones) found ourselves technically shut out of speaking up even during those fifteen minutes. Though the public relations firm handling this project has committed to “do better” (based on poor feedback from the advocate community), the event at the very least delayed the onset of any next steps that might have been taken toward helping patients. The support of HHS in getting this agenda on track (perhaps restoring funding for the gathering of PFE advocates) would, I believe, serve the public good.

History tells us that against strong lobbying interests, only public demand can fuel the engine of culture change. Many of us in the advocate community have innovative ideas on how to accomplish this. Personally, I’ve offered to help the PfP PFE network develop and deploy patient engagement strategies that utilize social media, the talents and passions of new college graduates, and a new patient-centric device that empowers the patient with tools for hand hygiene, communication and the management of care transitions. Whether it’s these or other strategies that ultimately are adopted to foster patient engagement, I’m hopeful we can move quickly, as every day that passes is a lost opportunity to save someone’s family member from avoidable medical harm.

I appreciate your consideration of this input, and would be pleased to provide further detail. Thank you for your work toward a more responsive, holistic and satisfactory health care system.

Sincerely,

Pat Mastors

Patient Advocate, PfP PFE Network contributor, Member, Rhode Island HAI Subcommittee, Member, Consumers Union Safe Patient Project, Participant, IHI Annual Forum, President and CEO, Pear Health LLC

www.thepatientpod.com

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[1] For the report, researchers looked at data from the Emerging Infections Program, NHSN, and c diff prevention programs in Illinois, Massachusetts, and New York. Key findings include:

·             94% of all CDIs were related to various precedent and concurrent health-care exposures

·             Of these patients, 75% had CDI onset outside of a hospital.

·             Some cases occurred in patients who were exposed to multiple settings including nursing homes and hospitals.

·             Mortality from CDI increased from 3,000 deaths per year during 1999–2000 to 14,000 during 2006–2007; over 90% of these cases were in patients aged 65 or older.

·             Hospital-onset CDI are estimated to cost $5,042–$7,179 per case.

·             Much of the recent increase in the incidence and mortality of CDIs is attributed to the emergence and spread of a hypervirulent, resistant strain of C. difficile.

(Sources: The Advisory Board Daily Briefing, http://advisory.com, March 7, 2012; Centers for Disease Control and Prevention, http://www.cdc.gov, March 6, 2012)

A broken heart; an award-winning video

Emily-Ann and her Dad

In August 2008, the week before Emily-Ann Croke of Riverside, RI started freshman year at Providence College, she said goodbye to her father.

Forever.

He'd spent the last days of his life in a hospital intensive care unit. He'd come in to the hospital for treatment of esophageal cancer. Emily and her mom were stunned when he died six weeks later of sepsis from multiple infections. He was 48.

Soon after, Emily ended up testifying for passage of a new patient safety law in Rhode Island. Otherwise jaded lawmakers squirmed uncomfortably, as an only child recounted her last memories of the most important man in her life: 

"... there were also so many absolutely repulsive things that I witnessed while my father was in the hospital that not only caused the spread of these diseases, but should not have even occurred under any circumstance. For example, while fighting C-diff [infection], which resides in the colon, the hospital staff gave him an enema. When my mom later walked into the room there was human feces all over the floor, which no one bothered to clean up. My mom ended up cleaning the floor, which not only presented a threat to her and to other sick patients, but also to everyday visitors and staff..."

Emily was at the State House, testifying, at my urging. In fact, I'd lost my own father to complications of a C-diff infection two years before she lost her father. (Sadly, there are more of us than you might think.) 

The law passed. Emily went on with her college life. But the more she read about hospital-acquired infection (HAIs), the more alarmed she became...both by the prevalence of the problem (99,000 people a year die from HAIs), and the fact that most people are clueless about the risk. She wanted to do something.

She contacted me again a few months ago. Could I help put her in touch with some people to interview for a film project on hospital-acquired infections?

Last month, the Providence College Film Festival screened a dozen student-produced films. I watched, alongside Emily, her mom and a family friend. The last video presented, "A Silent Epidemic", was shot, written, produced and edited by Emily-Ann Croke.

Emily's film won first place. The judges swarmed her afterward. This is important...people need to see it...you should enter it in other film festivals...

Here it is: a daughter's homage to her father, a heads-up for you, and a fine piece of video on its own. Watch, and then Tweet, re-post and share it...you can help Emily make a difference.