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.