10 Ways the Patient Voice Institute is Shaking Things Up

Launching PVI at HxRefactored

So excited! I've been away from this blog for several months because I've been collaborating with some amazing patient advocates to create the Patient Voice Institute (PVI).

In my last post here on Islands of Excellence, I lamented the lack of an over-arching organization that embraces and supports the work, voices, and best practices of patient advocacy groups. Diane Stollenwerk, a brilliant operations and organizational professional with deep understanding, experience and passion for quality health care, reached out to me after reading the post. We asked those dangerous questions, "if not now, then when? And if not us, then who?" And we were off to the races. (This post also appears on the PVI blog.)

At the HxRefactored conference in NYC last month, I was given an opportunity to get up on stage and introduce the non-profit Patient Voice Institute. Though I’d been in front of cameras for years as a news  anchor, my stomach was in knots. For months, our small operations team had invested our time, heart and soul into building this vision: a first-of-its-kind training, matchmaking and advocacy organization, created and driven by patients themselves, to achieve more patient-centered health care.

You might well ask why, with the excellent work of the Partnership for Patients, the IPFCC, Planetree, IHI, the CU Safe Patient Project, the Center for Advancing Health, Consumers Advancing Patient Safety, and other groups formed to address patient and consumer issues (too many to mention), we’d need one more “patient engagement” group.
Well, for one: at the center of health care, patients and families – with all their accumulated experience and wisdom-- remain way underutilized in fixing what ails health care.

Since then it’s been a bit of a mad scramble to keep up, as patients have begun to sign up with PVI and tell their stories, organizations inquire about speakers, and like-minded groups invite alliances.
And second: there is no overarching organization formed by patients themselves to address the full array of patient perspectives, based on research with patients.
It’s not for lack of candidates. Mention in any conversation (as I do when asked) that your work involves helping people have better medical experiences, and prepare yourself: everybody will start telling you a story about their mother, brother or friend. Sometimes these stories inspire; too often, they hurt to hear,let alone experience first hand.
It’s not for lack of passion. When you have a life-changing “medical awakening”, like losing a child, or beating a fatal cancer diagnosis, nearly dying of flesh-eating disease, or all but drowning in complex medical forms and bills, it triggers in some of us an unstoppable mission to share what we learned to help others.
It’s not for lack of effort: a dedicated number of us are out there individually every day, on panels, at podiums, on webinars, in conference rooms and board rooms—wherever we’re invited to have a seat at the table.
What, then? I’d say that “a seat at the table” isn’t enough, and too many of those chairs where patients should be sitting, still go empty. No matter which side of the bed rail you’re on, if you want health care to improve, the lack of meaningful involvement by patients in all aspects of health care is a big problem.
Here are ways the Patient Voice Institute intends to help solve it:

1. Preaching outside the chorus. Too much of the conversation about improving healthcare happens in the “hallowed halls” of healthcare conferences and policy meetings. With the tools of social media, and outreach through initiatives involving YouTube, contests and “Razzie” awards, PVI’s approach is to embrace everyday citizens (patients) in novel ways to care more about health care, talk about it with friends and family, and make healthier living more of a team sport.
2. A speaker and referral service The Patient Voice Speaker’s Bureau has an “A-team” of compelling speakers and consultants (a list that’s growing as I write this), offering authentic patient perspectives and research-based principles, referrals based on topic or tone, and an easy way to find them.
3. Consistency. As individual patients, we bring our authentic story and its lessons; as members of the PVI community we also weave shared, research-based principles into those experiences, giving us greater depth and impact as improvement partners.
4. Readiness. A harmed patient or family member can be so raw emotionally they can’t help but use a speaking opportunity to vent. (Knowing some of their stories, it’s hard to blame them.) But ultimately the audience (not directly involved in the case) can feel shamed and blamed. PVI works with patients and family members to help them use their story in ways that create effective climates for learning (see # 4, below).
5. Clarity of values. PVI embraces partnership, inclusion, collaboration and excellence. These “family values” guide our path and our community-building decisions, and how we approach our work with everyone.
6. Training. The more compelling and convincing we are in our presentations, and the more each of us understands and can speak to the full range of issues confronting all patients and providers, the more effective we can be.
7. Organization, infrastructure, and a home. Many patient groups are disease-specific, or focus on safety, partnership, data, dignity and respect, or another critical topic. PVI unites these themes under one umbrella, providing a platform for everyone to amplify their best practices. We invite all patients and families to join our community at any level of engagement.
8. Diverse but unified leadership. PVI’s Senior Advisors are among the nation’s most respected and successful patient voices. Each is vastly different in style, approach and story. But each signed on to PVI knowing that by working together we can achieve more than any could do alone.
9. Resources. Some newly activated patients seek simple on-line tools; others need coaching to more firmly establish their value as improvement partners or support such as stipends to attend key conferences or events. PVI intends to provide a full spectrum of this kind of support.
10. Self-reliance. As a group, patients do not yet have the “market power” that has driven culture change in other industries. PVI is building the knowledge, credibility, and coordinated action to create equal power for patients in the healthcare market. We act on the belief that our best hope is to look in the mirror and create the change we want to see.

Not all these pieces are in place yet, but you can help get us there. The Patient Voice Institute community needs your ideas, feedback, contributions (stories, referrals, funding), Tweets, blog posts and other social media love. Tell a friend. Get involved with us. Together we can ensure patient voices help fuel the emergence a more holistic, functional and affordable health care system—one we’ll be proud to pass along to our children.
Have you had an experience, a “medical awakening” others can learn from? What did you learn? What do you want others to know? What would you do differently? The Patient Voice Institute invites you to tell your story, and help create a new day in health care. Email us at info@patientvoiceinstitute.org. Follow us on Facebook and Twitter.

The Gift of Patient Advocates

When you purchased holiday gifts online this season, did you check customer reviews before you bought? Of course you did. How wonderful to have insights from customers with experience!

For those wondering what “patient advocates” do, it’s that. Share insights for the patients that come after them, in hopes of helping them have a good experience, and avoid medical harm. (The sentiment is eloquently expressed in this poem shared by Linda Kenney, who founded MITSS -- Medically Induced Trauma Support Services-- after nearly dying from an anesthesia error during ankle surgery.)

“If patients don’t share their stories, who are you going to learn from?” says Alicia Cole, a successful LA actress who now speaks about her near-fatal battle against  necrotizing fasciitis (flesh-eating disease), acquired following "routine" surgery.

But who ARE we, exactly? What DEFINES a “patient advocate”?

Lindsay Nohr Beck, left, with
Dr.Nancy Snyderman, at IHI

I’ve been thinking about this a lot lately, since a telling audience reaction during a plenary speech at the Institute for Healthcare Improvement Forum in Orlando last month, attended by some 6,000 people, mostly providers. On stage was NBC News Chief Medical Editor Dr. Nancy Snyderman and her long-time patient, Lindsay Nohr Beck, who pretty much single-handedly reformed insurance benefits so that cancer patients don’t have to compromise fertility. (Watch the fascinating and moving interview here). In telling her story, Lindsay laughingly referenced the negative reaction when doctors or insurers were told by their staff “the patient advocates are waiting to meet with you”.

In the audience, this comment was met by a ripple of knowing (sympathetic?) laughter. A snicker drew my attention to the man on my left, who met my eyes with a nod and an eye roll. As a patient advocate myself, it stung.

But then, I realized, it’s understandable.

Because, what is it that defines a “patient advocate”, anyway? Is it the nurse who privately encourages a family to ask for a certain treatment? A mom with a third-grade education who insists to her doctors “my baby’s breathing just isn’t right?” A father who loses his son to multiple medical errors and spends a lifetime making sure the same mistakes don’t befall another family? A person with formal advocacy training who hires herself out to sit at a patient’s bedside, managing care, paperwork and billing? A physician who calls a colleague late at night to discuss a tricky diagnosis? A survivor crippled by multiple botched surgeries and impoverished by legal and medical bills firing off desperate, outraged emails to the news media? Or the elderly man who calmly declines aggressive intervention for his terminally-ill wife?

Yes, all of the above. We are a random, diverse and self-defined group. We are collaborative. We are rebellious. We are seasoned and thoughtful. We are raw and angry. We see good in every person who devotes their life to health care. We see enemies everywhere in the “medical/industrial complex”. We have no medical training at all. We have devoted years to taking courses and achieving certifications to understand the system and how we can help improve it. We are a rich, bubbling stew of passions, visions, hurts, head trash, and hope. In short, both before and after our “medical awakening”, we represent the full spectrum of the human condition.

At the IHI Forum for speaker training (second session), L to R:
Pat Mastors, Joyce Resin (IHI), Alicia Staley,
Jean Rexford, Alicia Cole, Dave deBronkart,
Catherine Rose, Barbara Lewis,
Randi Oster (missing: Patty Skolnik)

I can sympathize with health care organizations, working to meet financial and cultural benchmarks of “patient-centered care”, trying to embrace and collaborate with this motley crew of “patient advocates”.  In 2013 I personally was honored to work with the federal Partnership for Patients (PfP), the Center for Connected Health (CCH),the Institute for Healthcare Improvement (IHI), the Consumer's Union Safe Patient Project, the Institute for Patient- and Family-Centered Care (IPFCC), and the National Patient Safety Foundation (NPSF), among others. Of course my colleagues and I appreciate being invited into the conversation, having our input solicited, and in notable cases, seeing our feedback incorporated into practice. (IHI and the PfP in particular deserve credit for taking steps to support professional development for patient advocates.) 

But if we patient advocates want a beefier role in the dynamic of quality improvement than that of “invited guest”; if we truly want to lend meaningful support to clinical excellence, have impact at health conferences, ensure that policies are patient-centric, carry weight in legislatures and on medical boards, and inspire physician practices, we have to elevate ourselves as a group, to consistently convey the very leadership, professionalism and respect we expect from our providers. Otherwise, how will they avoid the “box of chocolates” dilemma? (“You never know what you’re gonna get”)?

More patient advocates than you might think have achieved that respect. Listen to “e-Patient” Dave deBronkart, Patty Skolnik, Regina Holliday, Alicia Cole or Trisha Torrey do a keynote speech. Invite Helen Haskell to head a committee, develop a protocol or advise your board. Ask Ilene Corina to conduct a patient advocacy training.  Look to Julia Hallisy for patient empowerment resources. Ask Christian John Lillis how to organize and mobilize a patient/provider coalition. Learn from Kim Witczak how to pull a patient-centered conference together. Get Sue Sheridan to review your hospital's policies on disclosure of harm. (By the way, each of these remarkable people can do any of these things). These patient advocates (respectively, a marketing and IT geek, corporate executive, artist, actor, teacher, archeologist, postal worker, dentist, fundraising specialist, advertising consultant and banker) took a traumatic medical experience and transformed it into something instructive, positive and inspiring. And (with sincere apologies for not mentioning others) they’re just a handful of the patient advocate dynamos out there I’ve had the good fortune to meet and learn from. (And there are many more I look forward to meeting)!

But, like pioneers in any new social movement, most of us work with big passion and little help. Though some are modestly compensated through speaking, honoraria or grants, and some head organizations supporting patient agendas, (and some have had projects successfully funded on Medstartr), there’s no over-arching professional infrastructure that exists to support patient advocates’ professional training and development, underwriting the cost for their time and expenses to attend conferences, secure vendor booths, or host “networking” events. 

Pioneering, by definition, is lonely work.

But we continue, hoping we'll become obsolete-- when the issues of safety, inclusion, access and fairness we raise are honestly, meaningfully and routinely addressed. At the same time, the snickering and shuddering at the prospect of working with “patient advocates” will stop when we become respected as a group for the wisdom we've gained from our experiences, and the consistent professionalism with which we share them. 

To get there, both sides need leaders that focus on what we share, instead of what separates us. Who can, with awareness, re-cast seeming debacles into opportunities.

Richard C. Boothman, JD, MITSS 2013 keynote speaker
(Photo courtesy of MITSS)

On that note, I was inspired by the insightful remarks of one such leader, Rick Boothman, Executive Director of Clinical Safety for the University of Michigan Health System, delivering the keynote speech at the 2013 MITSS annual fundraising dinner. (Boothman developed the "Michigan Model", a proactive system of disclosure and compensation for patients following incidents of medical harm.) Here, he’s speaking about President George W. Bush and the infamous incident, following the announcement of US troop withdrawal from Iraq, where an Iraqi journalist hurled his shoes at the President. (In the Arab culture, apparently showing someone the soles of your shoes is a sign of contempt.) 

I leave you with an excerpt from Boothman's speech-- and an invitation to be inspired yourself.

…The journalist  “…was wrestled to the ground, beaten severely and hauled away,

Photo from Seattle Times

sentenced to three years in prison and reportedly tortured. 

Later the same day at another press conference with characteristic, self-indulgent swagger, President Bush quipped, “If you want the facts, it’s a size ten shoe.” 

I have played that incident in my mind over and over for the past five years. 

I think to myself, what if?  What if, in the chaos that followed the incident, as that man was being wrestled to the floor and beaten, the United States President had stepped down from the dais, parted the crowd . . . and helped him up?  And what if, recognizing the depth of emotion that compelled that journalist to do something so risky, so dangerous, so desperate - the same emotion that was driving thousands of Iraqis to protest in the streets - what if our President had invited him to meet privately to talk about how he, and his fellow Iraqis viewed the United States’ occupation of their country?  To explain how their lives had been so profoundly changed by a mistaken war? 

What a stunning scene that might have been, don’t you think? 

It takes more guts to understand, than it does to make light of a man’s desperation.  It’s a lot easier to label someone than to meet them.  It’s not a sign of weakness; it’s a sign of strength and compassion and moral conviction and respect.  This was an opportunity to demonstrate on a very basic level, that though we shared sacrifices profound and intimate and dear with the people of Iraq, we also acknowledged the greater impact that war and ensuing occupation had on the Iraqi people. What a statement that might have been to the people of Iraq, to the people of the Middle East, to the world. 

What are we afraid of?  What prevents us from making such basic human connections?"