The energy in the room was palpable. I go to many conferences and events, but this one was different. No canned speeches. No boring PowerPoints. No people you’re trying to avoid. Instead the inaugural Partnership with Patients Summit, held September 21 through 23 in Kansas City, MO, was filled with animated conversations, real-world education and tons of audience participation. And hugs, lots of hugs, among friends and colleagues meeting for the first time after having gotten to know each other through Twitter and Facebook.

Partnership with Patients (PWP) was the brainchild of artist, blogger, orator Regina Holliday. For those who don’t know Regina, it’s only a matter of time. She is one of the most active and effective patient advocates in the country, perhaps world. Regina is a tireless spokeswoman for patients’ rights, with a particular focus on medical data access. The conference objective was to bring patients, providers, government and industry together on neutral ground to learn about each other and share specific strategies for engaging more effectively. As Regina wrote before the conference, “For too long patient input has been an afterthought in health policy. We are changing that.”

Intouch Solutions supported the event providing funds for patient travel and sustenance (food/drink). It was an easy decision because our roots are in patient empowerment. Our CEO Faruk Capan created the first online community for multiple sclerosis (MS) patients (MSWatch) after observing how lonely and isolated many felt. Plus PWP was being held in Kansas City, which is HQ for Intouch. We had to be involved!

Unfortunately I couldn’t stay for the entire 3-day program but was there for Day 1 and most of Day 2 (until dinner). The energy, the people, the quality of discourse made an impression on me. There was so much warmth, inclusiveness and frankly, love, in the room. I don’t get to say that about most conferences.

In no particular order, my personal Top 10 list from PWP (a/k/a #cinderblocks on Twitter).

1. Re-connecting with Michael Millenson, incoming president of the Society for Participatory Medicine, and hearing his sage words at the opening of PWP.

2. Getting sprinkled with purple fairy dust by Amanda Greene (@LALupusLady).

3. Listening to Lisa Fields (@PracticalWisdom) share tips & tricks on using PowerPoint effectively, and using Ferris Bueller to drive home a point.

4. Seeing how eloquent and effective Tiffany Peterson (@TiffanyAndLupus) is when speaking about the challenges facing patients.

5. Meeting the people behind their Twitter handles for the first time : @stales (Alicia Staley), @kaitbr (Kait Roe), @Practical Wisdom (Lisa Fields),      @AlexYperifanos (Alexandra Yperifanos) @FMDChat (Sarah Kucharski).

6. Learning about Eli Lilly’s effort to bring open innovation methods to  drug development from Jerry Matczak, Gary Takher & Dean Sellis of Lilly COI.

7. Marveling at Regina’s Lego display at Friday night’s Welcome reception – see the photo in Gary’s blog post Patients Connected Like Legos.

8. Having an unfiltered, honest dialogue about perceptions of pharma by the patient community. (See my colleague @WendyBlackburn’s blog post for more on that discussion.) Thanks especially to ePatient Dave DeBonkart, Dr. Steven Daviss, and Michael Weiss for their participation.

9. Hearing about new practice approaches and tools from Dr. Ryan Neuhofel of NeuCare and Dr. Joe Ketcherside of PocketHealth.

10. Getting a big bear hug from Regina  (@ReginaHolliday) and knowing she meant it.


What a privilege to be part of this ground-breaking event.

Now that Sermo has been sold to World One (July 2012), there’s been heightened talk among pharma marketers about the true value of physician social networks. Do doctors use them for peer-to-peer interaction or only to generate a little extra income from market research? We reached out to Doximity, which has been generating tremendous buzz in the market, to find out.
                                                                    
Doximity is not your typical network. For starters, it’s designed for one type of user: doctors. It’s not a physicians’ Facebook and is even more professionally focused than LinkedIn. In actuality, Doximity is an online utility that facilitates and expedites collaboration between doctors at the point of care, when they need it most. Doximity focuses on alleviating the headaches physicians have when trying to connect with each other quickly — saving time and resources and possibly even preventing medical errors.

At its core, Doximity is a massive directory — a fairly traditional concept. But it’s no ordinary directory, says co-founder Dr. Nate Gross.

“This is the gold standard directory that has been built from multiple data sources through the Open Data Initiative and the AMA as well as multiple other partners,” Dr. Gross said.

Plus, it is available only to doctors. Why is this so important? Doctors are more likely to add additional — and essential — information, like cell phone numbers and personal emails, to their listing if it’s private. Led by CEO Jeff Tangney, the co-founder and former President/COO of Epocrates, the Doximity team expended quite a bit of time and resources on Doximity’s design to make sure doctors found it user-friendly and easy to engage. Another requirement was that it be designed with mobile usage in mind since smartphones and iPads are physician staples.

Trust is bred through transparent, verified data on Doximity. Unlike some sites designed for doctors, here there is no anonymity. Doctors know who they are talking to; indeed, they are reaching out to specific colleagues or even medical school classmates.

“Anonymity prevents physicians from delivering real clinical care,” said Dr. Gross. “We live within a fragmented healthcare system. The best thing you can do for patients is help their doctors communicate in a safe, authenticated environment.”

Since its launch in 2010, the site has grown to include over 100,000  of U.S. physicians and is expanding daily, mainly by word-of-mouth. The median age is mid-40s, and users are fairly evenly distributed among specialty and geographic location. Doctors must opt-in and register to use all the site’s features, but even those who don’t can still derive some value. For example, a member physician can fax a non-member using Doximity’s secure, HIPAA-compliant network. There are additional features as well — like iRounds, for online collaboration around clinical cases (think: virtual curbside consults); and DocNews, for reading medical journals with a custom article lineup based on one's clinical interests.

Doximity has received over $28 million in financing over time from well-established venture capital firms, including Emergence Capital Partners, InterWest Partners and Morgenthaler Ventures. The business model is evolving and may include pharma participation in the future, but that is still up for discussion. Most important to the company’s leaders is that physicians can use Doximity securely and efficiently without banner advertisements. Doximity is not currently working with any pharmaceutical companies, but they are open to discussing higher value interactions, such as physician research collaboration.
Dr. Gross shared two interesting data points with me. First, it takes an average of 17 years to incorporate new, evidence-based medical knowledge into routine clinical practice (according to research conducted by the Institute of Medicine). Second, medical errors are the fifth leading cause of death in the U.S., largely because of miscommunication. Doximity is trying to solve both problems by providing doctors with a modern, safe and reliable way to communicate.

How has the physician-patient relationship evolved, and is it for better or worse? Originally published on pharmaphorum.com, Bunny Ellerin discusses the changing nature of the physician-patient relationship and questions what needs to change on both sides in order to improve it.

I remember the first time I fired a doctor. It was 2003, and I was pregnant. There were myriad issues I wanted to discuss with the Ob-Gyn during the first visit but couldn’t. Not only did he rush me through the appointment, but also wouldn’t address many of my concerns. I walked out the door and left the practice forever, but not without writing a letter detailing why he’d never see me again. At the time, I didn’t consider myself an engaged patient (didn’t even know there was such a thing), simply a person with strong beliefs that my questions were important and should not be dismissed.

Fast forward to 2012 and there are plenty of like-minded people who are e-patients: equipped, enabled, empowered and engaged in their health and healthcare decisions (Dr. Tom Ferguson’s definition – a founder of the e-patient movement). They are eager to be participants in their care, not simply recipients of directives from healthcare providers.

Today it is relatively easy to acquire medical knowledge through health portals, hospital sites, social networks, blogs and even scholarly publications. Study after study confirms that individuals are actively consuming information about diseases, drugs, therapies and treatments. They are hungry for insights that will help them manage their conditions and lead better lives. For patients the biggest challenge isn’t lack of information, it’s their inability to discuss what they find with those they want to trust most – their physicians.

A recent study conducted by researchers at the Palo Alto Medical Foundation Research Institute and the Dartmouth Center for Health Care Delivery Science (published in May 2012 issue of Health Affairs) underscores this problem. The investigators set out to understand the barriers to shared-decision making between patient and physician and uncovered surprising findings. In theory, patients wanted to engage in a dialogue about their treatment options, but in practice they were scared to do so. They feared being labeled difficult, uncooperative and too assertive. They didn’t want to create a stressful situation with their doctor.

So how do we move to a healthier physician-patient relationship? Start by examining communication patterns and addressing the gaps, recommends Dr. Meredith Gould, a sociologist by training whose work focuses, in part, on developing ways to create communications between physicians and patients.“If you don’t understand how people learn and communicate, it will never work. There is confusion between authoritative with authoritarian. They are not the same.”

Communication skills have been largely undervalued in medical education. The Physician Leadership Forum, a special interest group within the American Hospital Association, issued a white paper in June detailing the competencies physicians will need in order to succeed under health reform and new care models being implemented in the United States (Affordable Care Act). Interpersonal and communication skills stood out among the most important but least advanced in today’s medical environment. Specifically cited as areas of weakness were empathy, emotional intelligence, conflict management and understanding of cultural and economic diversity.

Study excerpt:

As a place to begin, task force members felt that communications—both effective information exchange and working effectively with the health care team—are essential to the delivery of health care in a safe and efficient manner and should be emphasized in every interaction. While physicians are armed with a strong technical knowledge, as well as a capacity to absorb large amounts of information, historically, medical training and residency programs have not valued the full scope of competencies.

Dr. Val Jones, a rehabilitation medicine specialist and long-time blogger at Get Better Health, published a funny, poignant and instructive piece called “In Defense of Doctors: Why We Act Like Jerks, and How to Handle Us When We Do”. In it she delves into the psycho-social issues that lead some doctors to adopt an off-putting manner, exhaustion and fear or failure among them.

At the same time, Dr. Jones recommends that patients examine their own behavior if they seek a collaborative relationship. They should come prepared for their visit and adhere to the treatment agreed upon; they should avoid bringing extraneous materials and it’s never a good idea to mention lawsuits.

Both sides have plenty of work to do to evolve the patient-physician relationship. But as Kelly Young wisely points out, “It’s important we avoid portraying the situation as doctor vs. patient. We need to work together. The enemy is the disease, not each other.”

I attended the 2012 Social Communications & Healthcare Conference in NYC on July 19th, an event I have attended several times in the past because I like the length (half-day), price (under $200) and case study format. This time I was able to participate as a roundtable moderator, which was fun because I got to reconnect with grad school classmates and industry colleagues. The content on stage was valuable and informative (The Mayo Clinic’s Dr. Farris Timimi is ALWAYS fabulous), but as usual, the most important observations came from sidebar conversations. 

First, many wondered about the dearth of industry members in attendance. There were a few on stage (like Pfizer’s GetOld team), but only a small number of pharma, hospital or other healthcare stakeholders were in the audience. The room was comprised mainly of agencies and industry consultants. In the early years of this particular event, I recall a robust showing from both camps – industry and industry service providers.  Those at my roundtable wondered whether it had to do with the lack of progress that our industry has made in social media. There’s been lots of talk and not as much action. Are people giving up? Or are there so many conferences devoted to digital, social and mobile that we are at a saturation point? Whatever the reason, it was disappointing that those with the wherewithal to implement the many interesting ideas that always surface were largely absent.

Second, patients have come into their own. Their voices are represented and taken seriously at these conferences. On stage, LBi Health used its case study time to outline a model for social advocacy that leverages the patient viewpoint. The panel that concluded the program (the first time the organizers tried a panel format) was focused around the patient and included Amy Dixon (nurse, RNChat moderator and VNSNY blogger) , Sarah Krug (Executive Director of Cancer 101 and president-elect at the Society for Participatory Medicine) and Dr. Howard Luks (orthopedic surgeon and social media maven). The conversation touched on sensitive issues like transparency and information standards.

Finally, I have noticed that the patients are typically the most prolific in recording the proceedings via Twitter. My seatmate for the first half of the day was none other than patient advocate extraordinaire Tiffany Peterson, aka @TiffanyAndLupus. If you want to know what’s going on, follow a patient opinion leader like Tiffany. And patients like Tiffany should be at every conference of this kind, not only in the audience but on stage.