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Hello W2O,

Following up from our first update last week, please see below for a recap of presentations from our colleagues and special guests on Day 1 of the W2O Go.Ahead in Health Summit!

The Patient Perspective (Dorothy Jones, Vice President of Marketing at Susan G. Komen)

Dorothy spoke about the best practices in reaching patients and how digital channels are amplifying the patient voice and advocacy. In the changing digital landscape, we need to focus on the way we approach access, advocacy and digital channels. The digital space has helped us become more informed, however, people aren’t utilizing the information. Dorothy said it is important to empower people to act on this information by keeping your messaging simple, illustrating the benefits clearly and providing actionable next steps. Patients want information. Find out where they are, what they are looking for and in what stage of their journey they need this information. After the presentation, W2O employees were able to witness something truly amazing. Following a heartfelt story from a cancer survivor, W2O offered a generous donation to the Susan G. Komen foundation. The round-of-applause felt in the room solidified the importance of the work we do each day.

Panel: Future of Integrated Healthcare Delivery
Moderators: Jennifer Davis and Marisa Carullo
Panelists: Kathleen Hertzog, Vice President, Marketing & Communications at Availity, Elizabeth Gerstung, Managing Director at Evolent Health, and Betsy Kline, Vice President Global Marketing, Proteus Digital Health

The panelists spoke about how integrated health systems, companies and products are changing the way health is delivered today and in the future. Current trends are showing reduced hospitalizations and reduced costs associated with integrated health care delivery. We need to develop the market by educating people on these important shifts in health care along with what tools are available. We are going to have a broader audience, so it’s important to think about unique ways to engage them and take learnings from other industries on how to educate and drive action.

Involved physicians will create and empower informed patients and informed patients will take greater ownership of their health and their relationships with their physicians. With the evolution of the informed patient, patient engagement will rely on delivering integrated, personalized care tailored to the patient’s history, finances, demographics, etc. It’s about delivering the right information at the right place and at the right time.

Panel: Genomics Revolution
Moderator: Kelly France
Panelists: Tracy Garcia, Account Director, W2O, Raluca Kurz, MS, LCGC, Invitae, and Katherine Sutherland, MD, Women Physicians OB/GYN Medical Group, El Camino Hospital

The panelists discussed how genomics and personalized medicine are changing research, treatment and patient communication. Technology advances have brought sequencing prices down and has helped drive more interpretation of the genome, and the market for genetic testing is expected to increase with this trend. Genetics will likely ultimately create a revolution in diagnostics and personalized treatment. However, physicians are hesitant to use genetic tests due to the technology and uncertainty and insurers are worried about the expense. We need to demonstrate that the future of this technology will drive great medical advances and that reimbursement will work. Once this is achieved, genetics will ultimately be taken out of the clinic and brought directly to the consumer which will enable us to take action from a public health standpoint.

Panel: Putting it Together: Integrated Communications
Moderator: Audrey Gross
Panelists: David Witt, Christina Devi, Eric Hawkinson, and Carl Engelmarc

The W2O panel members came together to talk about overcoming the challenges of engagement, new opportunities, and lessons learned. When working with our clients, we need to be persistent on the value added in our propositions. Be aware of the current state of the industry and where the client sits, and use this knowledge to model how you can partner with them to be successful in the current climate.

These models should understand what the benefits are, measure those benefits and provide a summary of what the value is.
If our company is offering integrated communications, then our people should be familiar with all components of what we are offering – KNOW THE DATA. Clients want to know what the insights mean for them and how they will help their business. Have a clear process in place and look at the insights with a plan in mind. Work with your team to build integrated plans around these insights and client needs and bring options for solutions to a problem.

Stay tuned tomorrow for more updates!

-Roving Reporters

Today, FDA held a tweetchat to provide further clarity and answers around its guidance on mobile medical app regulation. The basic takeaway on the guidance (which can be found here) is … it’s good! It’s clear! It’s pro-innovation! That’s great for companies and developers, but doesn’t make for a very exciting Twitter exchange.

Essentially the types of medical apps the FDA intends to regulate are largely unchanged from the draft guidance, but impressively the areas where FDA intends to exercise enforcement discretion – in effect, a hands-off policy – are significantly expanded. As you may have read in my colleague, Brian Reid’s blog post on Sept. 24, big pharma and health care solution providers will, for the most part, be able to develop away with little interference.

Apps that help patients manage their own condition (without providing specific treatment suggestions), organize their personal health information, provide access to information regarding their condition or treatment, help them communicate potential medical conditions to care providers, automate tasks for care providers or enable patients to interact with their personal health records or electronic health records are all fair game.

And FDA certainly had its talking points down, per @FDADeviceInfo: “FDA’s final MobMed guidance supports innovation & protects consumers”. That was a message that got repeated.

FDA did provide a little more color around its philosophy:
• “Enforcement discretion” = FDA is not actively enforcing requirements for manufacturers to register and list with the FDA
• FDA will review apps in a way that balances risks/benefits without creating unnecessary burden for app developers
• The FDA guidance reflects its focused priorities on apps that pose greater risks to patients & is a big de-regulatory action
• Apps that require FDA review will be evaluated according the same risk-based system the agency applies to other medical devices

A brief recap of select Q&A from the tweetchat can be found below. The full tweetchat can be reviewed online at Twitter.com, #FDAapps:

Q. How will FDA be monitoring apps for compliance? Browsing the Apple/Google Play stores?
FDA: Our efforts are focused on education and clarity at this time; we are focusing on clarifying areas that need oversight and looking for voluntary compliance.

Q. Logging and recording data seems to be fine, but what about interpreting data and making care recommendations?
FDA: Apps that meet definition of a medical device but pose little risk to consumers are an area where the FDA is exercising “enforcement discretion”; however, making recommendations that change dosage would raise risk to consumers.

Q. Some dosing apps are simple calculations routinely used in clinical practice. Will FDA exercise enforcement discretion for them?
FDA: Yes – please see appendix B in guidance (pg. 23).

Q. Under what circumstances would FDA choose to alter its enforcement discretion paradigm as explained in the guidance?
FDA: We intend to follow this [enforcement discretion] policy unless we have new info that raises public health risk. If/when we change policies we will follow public processes.

Q. Is the FDA checking apps’ algorithms and/ or checking validation/evaluation of apps?
FDA: It depends on the risk of the device & patient exposure. With regards to functionality, it would be similar to other high risk development.

Q. Is there a time at which you hope to transition to another phase–one of enforcement and action?
FDA: We will allow reasonable time for app developers to be into compliance prior to enforcement actions.

Q. How long does app rev/approval typically take?
FDA: On average, it has taken 67 days for clearance but it depends on the complexity and functionality of the app.

Q. Approximately how many ‘clearances’ of apps are we talking about up till now?
FDA: The FDA has cleared about 100 mobile medical apps over the last 10 years

Other resources:
• For questions about a specific app, please email: mobilemedicalapps@fda.hhs.gov
• Health professionals & consumers may submit reports of mobile medical app adverse events or problems to FDA online & by phone @ 1-800-FDA-1088

Click for full report

2012 was one heck of a year for new treatments against various different forms of leukemia. In the span of 5 months, the U.S. Food and Drug Administration approved four novel therapies. Drug approvals always come with a spike of media attention, but we at W2O Group have been curious as to how that flood of interest compares with other events throughout the year, not only in news, but in all of the other conversations we have online about cancer.

This is of special interest this week, as thousands of oncologists, patients, advocates and journalists begin arriving in Chicago for the annual meeting of the American Society of Clinical Oncology.

So we decided to look into how we’re talking about cancer, both at the broadest level and in the context of more specific cancers and more specific communities. We’ve collected the results of this analysis in a new report, the Social Oncology Project, that seeks to draw conclusions from hundreds of thousands of tweets, news stories, blog posts and forum entries. We looked both at overall mentions, as well as how doctors talk about cancer, relying on our MDigitalLife database of verified doctors active online.

Our analyses found both encouraging news about the nature of the online dialogue about cancer, as well as some more concerning findings. For starters, there’s no question that we’re talking about cancer. A lot. In the last year, more than 16 million articles, posts, tweets and entries about cancer found their way online in the United States. That’s a lot of talk, and a testament to the impact of awareness raising campaigns.

In fact, there is a direct correlation between awareness campaigns and online conversations. Overall mentions of cancer rise in October due to a surge in posting around Breast Cancer Awareness Month. But similar, if smaller, increases can be seen in almost every cancer type. Lung conversations are highest in November (Lung Cancer Awareness Month). Mentions of colon cancer rise during March (Colon Cancer Awareness Month). Prostate volumes are up in September.

Not surprisingly, the most-talked-about type of cancer is also the one with the biggest awareness push: breast cancer. More people are talking about breast cancer than the other four of the five largest cancer killers combined. (Lung cancer, which kills more than four times as many people as breast cancer, has only 20 percent of the dialogue of breast cancer. Colon cancer, the number 2 killer, has only 10 percent of the conversation compared to breast cancer.)

The larger question of what is driving those conversations, however, paints a muddier picture, one that may be best illustrated by looking back at leukemia conversations. The unprecedented string of new drug approvals in the second half of last year didn’t create so much as a blip in the overall number of online conversations about blood cancers. But football did: when Indianapolis Colts coach Chuck Pagano announced that he had been diagnosed with acute promyelocytic leukemia, mentions shot up tenfold. The next big spike in conversations was also football-related: when the story of Notre Dame linebacker Manti T’eo’s fake girlfriend – who T’eo had said died of leukemia – broke.

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That’s not to say that celebrities and awareness months are the only drivers of attention, nor that the attention in one medium (say, Twitter) is reflective of discussions in others (say, online news). But, overall, we remain a social bunch online: raw data and “new chemical entities” from the FDA might not move us to share and reflect online, but human stories, be they in the news or those we hear from our friends and colleagues during awareness events, have a way of engaging us.

Scene from the ACR 2011 Tweetup. Photo by Lothar M. Kirsch (@Rheumatologe)

The first crocuses are poking up, a sign that the spring medical meeting season is upon up. This week, it was Conference on Retroviruses and Opportunistic Infections, and colleagues are preparing for everything from the American College of Cardiology meeting in a few weeks, to the American Society for Clinical Oncology and American Diabetes Association confabs in June. I haven’t seen the agenda for everything yet, but I’m confident that all of them will come up short in one profound way: patients will be underrepresented.

This isn’t new. Medical conferences in have long been tilted toward experts — those with data or experience. And attendees have long been rank-and-file health care providers who want to stay on the cutting edge of their field. In the old, top-down system, having patients at these confabs was superfluous. But those days are over, driven by three trends that are likely to reshape the health care system:

  1. The empowered e-patient is demanding the same information available to professionals. And if that information is available at medical meetings, that’s where the patients should be.
  2. Increasingly, information is transmitted not only from provider to patient, but patient-to-patient. It’s no longer a safe assumption to believe that information only travels in one direction.
  3. The patient experience is increasingly important in the treatment process. The way quality of life impacts benefit-risk calculations is highly personal, making an open discussion with patients crucial to understanding diagnosis and treatment.

These trends aren’t entirely hidden, and yet patients are still hard to find at meetings. Part of this is cost. Part of this is logistics. And part of this is the challenge that comes with overcoming the inertia of the existing presentation-first mentality. But there are enormous  benefits to be reaped for groups that can overcome these obstacles.

Last fall, I attended the American College of Rheumatology meeting, and I participated in an informal “tweetup” during the sessions. A group of individuals: half patients, half providers, found a quiet place in Chicago’s McCormick center and had a robust dialogue about how patients view medical advances and what new forms of communication might create bridges between professionals and information-hungry patients. Much of what I took in during the conference has already left me, but not the experience of that tweetup.

(For more on patients at medical meetings in general, and ACR in particular, please see Kelly Young’s recent publication in the Journal of Participatory Medicine.)

The goal, then, is to recreate that experience, on larger scales and at more venues. Conference organizers can play a part by engineering patient interaction into the program (though official, promoted patient activities). And all of us need to think through ways of reducing the cost burden that prevents patients for attending these kind of events, such as discounted rates and more aggressive sponsorship programs.

The result would be stronger patient communities, improved communication and — in the end — better medicine.

(Note: This is not an issue that’s exclusive to medical conferences. Patient voices need to be heard more often in as many diverse forums as possible. The annual SXSW Interactive conference kicks off tomorrow, complete with a health track. Yet patients are under-represented there, too. Is this a subtle plug for the patient-heavy panel I’m moderating on Sunday at 9:30 a.m., with Alicia Staley, Allison Blass, Kerri Sparling and Michele Polz? You bet. See you there.)

#MDigitalLife is a WCG program designed to learn from and to showcase physicians who are blazing new trails in the digital world – changing the way that medicine is practiced and better health is realized.  You can find previous posts here.

“The healthcare organizations who are going to do the best are the ones who can help and encourage their doctors to truly be a part of the community – to help make them human to the patients in the area.  Those are the doctors patients will want to go to for the long term.”

Jordan Grumet, MD

After completing his undergraduate degree at the University of Michigan, getting his MD from Northwestern and completing his residency in primary care at Washington University, Jordan Grumet was convinced that he wanted to be a hospitalist.

That didn’t fit properly, so he went into primary care with a large group at Northwestern.  But that wasn’t quite right either.  The sheer size of the group made it hard for him to really practice in a way that felt comfortable for him.  So he joined a sole-practitioner in Highland Park, Illinois in 2007 and has been there ever since – now as a partner.  The end.

Except that it’s not.  It’s true that ALL doctors are people – which means that they’re all unique.  But how many physician poets do you know?  How about physician-poet-fine art dealers?  Jordan is all those things.  In addition to the work on his blog, In My Humble Opinion, Jordan is working on his first poetry book.  In fact, Jordan’s journey into social media (and hence into MDigitalLife) started with a side project.

Several years ago, Jordan ran a web site selling fine art and figured that he’d need to start blogging in order to drive attention and subsequent sales.  It wasn’t until 2005 that he came to the realization that the social media skils he’d developed could also be applied to his real passion – medicine and health.  When you read Jordan’s blog, you’ll immediately notice some differences from most medical blogs.

“The remainder of the night was a blur. I couldn’t sleep because I was busy with other patients. The man’s wife and family came and went. It wasn’t till the next morning that the phone calls started to roll in.

Apparently my patient had three daughters from a previous marriage who were unaware of what happened. I took three calls that morning. I told three young women that they had lost their father. I waited patiently as they broke down. As I listened to their sobbing, I remembered what it felt like to lose my father. Each call lasted less then five minutes and left an indelible mark on my soul. I had never experienced a grief so pure and innocent as those young women’s. I will always feel responsible.

And this is what the chief meant by being “hurt.” If you practice medicine long enough, you will make mistakes. You will accidentally harm people. You will work long hours and deal with the most primitive human emotions. At some point you either learn to sublimate, learn to move on, or get crushed.

– Jordan Grumet, MD – excerpted from For My Son

A big part of Jordan’s blogging is for self-expression and his own development as a writer.  But it serves two other important purposes.

The first is to help his patients to get to know him in a way that they could never do in a short appointment (or even in a series of short appointments).  “Patients have to bare their souls to their doctors,” he says, “but unless doctors can find some way to equalize that relationship, they’ll never truly reach most patients.”  As a primary care doctor, Jordan describes one of his chief roles is to be “the ultimate detective.”  People come in with undifferentiated problems and symptoms, and you often have to work with them for months – or even years – to define their disease paradigm.  50% of any health problem has nothing to do with physiology – it’s about the psychiatric and emotional issues that come with it.  And the more his patients know and trust him (to the point of being willing to tell him when they disagree, or when they’re not adhering to their treatment), the better he is at helping them to get better.

“When my patients see that I care, it forms an incredible bond.  When they know that someone really understands, they just do better.”

Jordan Grumet, MD

The other reason for Jordan to do what he does is that he believes doctors have had their voice silenced by the system over the years – and that they need to regain it.  They’ve been painted as BMW-driving villains by the media and other players in the health system – and there’s nobody to tell their side of the story.  Through his writing, Jordan is laying down an example for other doctors – and in a small way, beginning to redress that balance.

“Doctors are human beings – and they have more in common with you than you think.”

– Jordan Grumet, MD

I, for one, couldn’t agree more … and I hope that doctors, patients, and people who simply appreciate good writing will visit (and subscribe to, and share) In My Humble Opinion.

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A sample from Jordan’s physician reading list:

Westby Fisher – https://twitter.com/#!/doctorwes

Bryan Vartabedian – https://twitter.com/#!/doctor_v

Kevin Pho – https://twitter.com/#!/kevinmd

PDara – https://twitter.com/#!/jedipd

Jackie Fox: http://twitter.com/#!/jackiefox12

Ramona Bates – https://twitter.com/#!/rlbates

John Mandrola – https://twitter.com/#!/drjohnm

Linda Pourmassina – https://twitter.com/#!/lindap_md

 

Last month, Susannah Fox and the brilliant folks at the Pew Internet and American Life Project and the California Healthcare Foundation put out a report that quantified with great depth how people use the Internet to gain health information, revealing that nearly one in five patients looked online for peers with similar health concerns. It was a tour de force, not the least of which was because a large component of the research looked at the specific needs involved in rare diseases, a finding that was widely discussed in the press.

Less heralded — but perhaps more important — was a deep division in where people looked for certain kinds of health information. For support and basic advice on day-to-day living, most people turned to their peers, demonstrating the triumph of the web as an extended support network. But clinical information still came — in a huge percentage of cases — from a patient’s physician, not Dr. Google.

When patients wanted a diagnosis, they turned to health care providers 18 times more often than they turned to their peers. For prescription drug information, providers  beat out friends, families and fellow patients 81 percent to 9 percent. For emotional support, on the other hand, peers were twice as likely to provide information on emotional support. And in moments of need, offline information-seeking continues to dominate.

The Pew research lays bare a reality that too often gets forgotten in our enthusiasm for technology, especially in communications. There is a sense that society’s gatekeepers and middlemen are being picked off, one by one. Travelocity can stand in for travel agents. The algorithm-derived Google News feed seeks to mimic newspaper editors. Yelp replaces food critics. As — as my colleague Bob Pearson points out in his new book, Pre-Commerce — ratings sites and social media others make advice-dispensing salespeople disposable.

But not in health. As rich as the information is on the web, we’re still turning to doctors when the medical issues turn complex. The implications for communicators are clear. First, we need to understand exactly what people are looking for online (support, advice, diagnoses) and tailor online offering to those needs. And second, we need to understand that education patients still means educating health care providers (more on that next week).

Fox has said the Pew report was 5 years in the making, and it will no doubt be seen as a definitive work in online health. And those it clearly paints a picture of patients and caregivers with increasing digital savvy, it also serves as a reminder that doctors remain central to information seeking. Communicators who ignore that group do so at their peril.