For over a year I’ve been the accidental manager of a community garden. All I did — I swear — is point out an open plot of land and people started pitching in, planting, asking friends to join them. All of a sudden we’d transformed a bare patch into something beautiful.

I thought for sure that interest would wane. I’d be left with a lovely little garden to tend on my own and I’d probably let it go after a while. But new people kept showing up to help. I frankly wasn’t ready but they came in, planted new flowers, and invited their friends to come over. They expanded the original plot and just kept going.

OK, so, before I take the metaphor too far, I should reveal that I’m not talking about a real garden. The community didn’t plant flowers. They planted ideas about what health care could be like if we remade it, without regard for money, politics, or any other reality.

The Patient Centered Outcomes Research Initiative (PCORI) was established in 2010 by the Affordable Care Act with a mission to help people make informed health care decisions, and improves health care delivery and outcomes, by producing and promoting high integrity, evidence-based information that comes from research guided by patients, caregivers and the broader health care community and a vision that patients and the public have the information they need to make decisions that reflect their desired health outcomes.

I am reporting in this post on the February 9 PCORI Board meeting in San Francisco that I attended remotely. See full slides here. I also attended live the October 2012 PCORI Patient Engagement Workshop in Washington DC and the November PCORI Board meeting in Boston. I completely support the mission and vision of PCORI and plan to continue my involvement in PCORI in the spirit of the S4PM mission: Catalyzing collaborative partnerships across the continuum of care to optimize health and health care. I am humbled by the challenges of meeting both visions.

Adapted from a letter distributed this week to members of our Society for Participatory Medicine, by President Sarah Krug.

The Society for Participatory Medicine is excited to announce our collaboration on a variety of initiatives with HIMSS, one of the nation’s leading health information technology groups.

Upcoming webinar:

Over the next few months, we will be working on a co-branded webinar around the topic of eConnecting with Consumers. As planning takes shape, we encourage you to submit topics of interest. We will also identify opportunities to develop co-branded resources and tools that can be included in a web-based eConnecting with Consumers toolkit to equip providers to engage consumers utilizing HIT.

HIMSS conference, New Orleans:

SPM will also be part of the 2013 HIMSS Annual Conference and Exhibition, March 3-7 in New Orleans. It’s one of the most important meetings in

As you see in Sarah Krug’s letter above, HIMSS and S4PM entered into a collaboration. I sit (with Ileana Balcu) on HIMSS’ eConnecting with Consumers Committee where we advocated for this partnership. Everyone on the Committee could be a member of S4PM, as they live and breathe our mission in their work and advocacy: Catalyzing collaborative partnerships across the continuum of care to optimize health and health care. Part of the agreement with HIMSS is to “Work collaboratively on co-branded webinars around the topic of eConnecting with Consumers.”

So, help us out. We are overwhelmed with possibilities. Our preliminary thoughts include: use the moderated panel approach with a small number of panelists from S4PM and eConnecting with Consumers Committee with a brief (3 min intro of the Committee and S4PM), brief intro of panelists (less than 5 minutes each), then 1-3 questions for the panelists to respond to. The questions should lay the groundwork for future and more interactive sessions. The webinars will be archived. The devil is in the questions. What do you think of the framework? Who do you recommend as panelists? What should the first questions be for discussion?

Next guest post by SPM member and former health system executive @NickDawson.

Ilya Prigogine received in the Nobel Prize in Chemistry in 1977. His work largely focused on Non-equilibrium thermodynamics. What he found is as fascinating for scientists and non-scientists alike. It turns out, according to Prigogine, closed systems are destined to collapse or fail. Open systems, by contrast, will usually grow and evolve[1][2].

Healthcare is notorious for its closed systems. We see painful reminders in restrictions on accessing our own health data. And it goes deeper. The processes, experiences and governance of health systems has also been, historically, closed. Today, healthcare represents a huge 18% of our gross domestic product. And, according to the WHO, the United States is 37th in the world in terms of outcomes.

It would seem Prigogine is correct. Closed systems tend to fail. Thankfully, that is changing.

Guest blogger Cristin Lind is an e-caregiver and e-patient; her personal blog is called Durga’s Toolbox.

When trying to find a definition for what real patient- or family-centered care looks like, I can easily to get caught up in inspirational jargon. But a recent visit for my biannual mammogram (fun!) helped me give a very specific answer to the question, “What’s the difference between system-centered and patient-centered care?”

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

• This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
• Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

Guest post by SPM member @NickDawson, a former health system executive now focused on patient experience, staff happiness and healthcare innovation. He works for Frontier Health in Richmond, Virginia. 

There’s a moment where something changes direction, irreversibly, because of irresistible forces – like when you toss your keys in the air. There is a split second when they stop traveling up, and start falling back towards you. We’re seeing examples of that moment every day in healthcare. One example is that the traditional doctor patient relationship, like your keys in the air, is changing direction. This week, a very poignant example came from Minnesota:

Dr. David McKee’s defamation lawsuit was the beginning of a four-year legal battle that ended Wednesday when the Minnesota Supreme Court ruled the doctor had no legal claim against [a patient’s family member] because there was no proof that his comments were false or were capable of harming the doctor’s reputation.

Dennis Laurion’s father was ill and in the hospital. Frustrated by what Laurion perceived to be a poor experience, he tweeted his dissatisfaction about Dr. McKee. In the initial case, the trial court dismissed McKee’s defamation case saying:

After years of delay, the federales finally finalized the HIPAA Privacy, Security, Breach Notification and Enforcement Rules.

Introduction

The Final Rule offers significant changes to patient rights and patient protections. (There is much more to the rule, but other aspects are not addressed in this post. Here you may find a link to the HIPAA Omnibus Rule, a Google+ Hangout taking a first look at the rule as a whole, and a bullet-point summary of the hangout; here you may find a piece I wrote on the Breach Notification Rule.  Some work remains to be done on other parts of the HIPAA rules, such as the accounting of disclosures provisions.)

Before detailing the patient-focused changes, a bit of broad-brush background is in order. The original HIPAA privacy and security rules are all designed to protect the privacy and security of “protected health information” (PHI) of individual patients. PHI may be shared among health care providers and payors (and health care clearinghouses – a type of claims processor) (collectively, Covered Entities or CEs) for purposes of treatment, payment and operations (TPO) without asking patients for permission. Any other use or disclosure of PHI requires patient consent. Some CE operations require dealings with Business Associates (BAs) — entities that are not CEs, but that end up using PHI to help CEs carry out their TPO responsibilities (e.g., medical records vendors, billing companies, etc.). Every CE is required to give patients a Notice of Privacy Practices (NPP) and to enter into a Business Associate Agreement (BAA) with each of its BAs, under which the BA agrees to maintain the privacy and security of PHI.

Below is the press release, but first a personal note: I, and all the founders and officers of our Society, are thrilled to announce that Barbara Kornblau has become SPM’s first Executive Director – a person with a real job here, passion, experience, and a charter to grow the organization and its reach. Say hello and give a big welcome, in the comments! And say hi on Twitter: @BarbaraKornblau.

Kudos to our search team: co-founder and treasurer John Grohol, president Sarah Krug, secretary Nancy Finn, president-elect Michael Millenson. Tead Neil Versel’s excellent interview with Barbara in today’s MobiHealthNews. Neil “gets” the importance of participatory medicine at a personal level – see our post about his story last year, HIT Journalist becomes patient advocate….

The press release: