Tuesday, June 29, 2010

Social media gaggle

Johnson and Johnson's Marc Monseau convened a group of health care social media addicts last night for a pleasant evening of dinner and conversation. Seen here are Chris Iafolla from Shift Communications, Laurie Edwards, Marc, Jack Barrette from WEGO Health, Shwen Gwee from Vertex Pharmaceuticals, yours truly, e-Patient Dave deBronkart, and Alicia Staley.

How weird to be in the physical presence of people!

As has been the case since I first started down this social media path, I learned more than I offered. The big topic was patient empowerment and creating true partnerships between patients and caregivers.

There was also some tech talk. For example, I never realized that the algorithms used by Google and other search engines actually make it hard for a person with an unusual physical problem or disease to find useful information. Since they are at the "tale end" of their disease, and since the search engines reward those sites that get the most traffic, a normal web search will often not pick up useful information for those patients. Thus, user groups -- self-created agglomerations of data-sharing colleagues from around the world -- can often provide people with advice that would otherwise be unknown. Patients can then take that information to their physicians and explore options. Powerful stuff!

But let me stop there and invite last night's participants to add their own comments, perhaps presenting something they learned last night or whatever perspective they would like.

10 comments:

Jack Barrette said...

Paul, thanks for kicking this off - and continuing a far-reaching conversation. You did raise another key topic: the role of the empowered patient as a driver of an entirely new doctor-patient relationship.

ePatient Dave's experience with the amazing Danny Sands, MD has been an exception - empowered patient works collaboratively with his doctor, sharing rich information gleaned from Health Activists and their communities online. But when Alicia chimed in that she'd developed a similar partnership with her oncologist, it became clear to all of us that e-patients like Dave and Alicia and Laurie are the model for the future.

Won't doctors enjoy their work even more when they start with an informed patient (vs. delivering "disease 101")? And won't patients inevitably find relevant info online that they may not have thought to mention otherwise? How can we get more physicians in touch with Health Activists to show them the power of Participatory Medicine?

Amy Tenderich said...

Sorry to have missed it!

I am attending another "social media gaggle" specifically for diabetes internet geeks ... er, online advocates, today. We too are struggling to get physicians "on board." We're actually starting with confronting the big advocacy and policy-setting groups for our illness: the American Diabetes Association and American Assoc of Diabetes Educators. Confronting them with our questions and gripes in an open session today. I can't wait ;)

Paul Levy said...

Amy,

You are one of the exemplars of this. Good luck today!

Laurie said...

Jumping off of your comments, Jack, I am reminded of your point from last about the importance of communication between physician and patient. We have some wonderful models of healthy, working relationships with physicians--I love that Alicia's doctor now allots more time for her visits, knowing she will come in with stacks of information. I think it takes a lot of work to get to that point, and communication styles and a willingness to be open make a big difference.

As a rare disease patient with hard-to-diagnose conditions, I've seen this a lot firsthand. The fact that my doctors are willing and, in fact, encourage me to share what I've learned from the patient community is of tremendous benefit to all of us.

Paul, I think this speaks to what you wrote about these specialized user groups and the valuable information they offer. Finding a better way to connect these parties to transfer knowledge would be fantastic!

It was great having a conversation about the online world in real life!

Chris Iafolla said...

First off, thanks for a great dinner last night and great conversation. It’s nice to connect with people in the real world from time to time.

Two things stood out to me from last night’s conversation. As has been discussed above, the patient/doctor relationship is in need of an overhaul. While this isn’t a new concept, it seems that much of the attention might be focused on only one piece of the equation. Many pundits have extolled the value of providing easier access to information for patients so they can play a large role in the health-decision making process. And while this is absolutely a noble goal, we often forget that there are two parties in that process and the doctor needs to be open to the information-sharing process. As you said last night Paul, most doctors are taught to be self-reliant and decisive—to take all of the tests and make a judgment. Perhaps we need to refocus some of our attention not only on the patient community, but also in the doctors that must facilitate that diagnosis and treatment.

The second thing that stood out to me is the need to unlock the power of the patient community to allow for better diagnoses, better quality of life while living with a disease and ultimately; better outcomes. The examples of a patient looking to treat aggravating mouth sores and finding help via social media in the form of an apple cider concoction and a patient that found an easy treatment for hand blisters as a result of cancer treatment were eye opening. Patient communities are sitting on a wealth of information. In many cases, the pharmaceutical company manufacturing the drug or running the clinical trial is in a unique position to serve as the information sharing mechanism to get this type of information to a broader audience. But as we talked about last night, FDA regulations often prohibit the pharmaceutical company from getting this information to patients if it falls outside of the label. There is a significant opportunity to unlock the information of the patient community, with the pharmaceutical companies as the conduits, to create better overall health outcomes.

Thanks again for the great company everyone!

Marc Monseau said...

Thanks for firing off this post, Paul. I too took away far more than I brought to the conversation.

In addition to Dave's points about having a better way to aggregate online content to assist patients when they are seeking useful, up-to-date information, I also found the discussion of the patient/physician relationship fascinating.

Helping patients better understand how they can and should work with and ultimately partner with their physicians is one cause we can all get behind. Checklists, examples of best practices and suggestions for interacting can all contribute to the development of a better physician/patient relationship that ultimately improves health outcomes for the patient.

To that end, I felt your thoughts about the education and training that physicians undergo was particularly helpful when trying to understand how to approach and work with your doctor. Perhaps a good topic for a blog post?

Thanks again for joining us, and I look forward to continuing this conversation. Perhaps next time, though, we should all meet up at Fenway!

e-Patient Dave said...

First, thanks to @Shwen for buttonholing me to participate in this. It was one of the most stimulating conversations about "new healthcare" I've had this year.

Second, Paul, it's illuminating for me to learn that not everyone knows how Google works. They reportedly tweak their algorithms for different types of searches, but the basic patented "PageRank" algorithm (named for founder Larry Page, not for pages) is patterned after the academic idea that a document is more valuable if a lot of other documents link to it - especially if those documents are highly rated themselves. (Note - that's not quite the same as rewarding pages that get the most traffic: Google focuses on inbound links to a page.)

(The Wikipedia page on PageRank has a diagram that conveys the concept. The bigger circles are more likely to appear high up on Google.

By design, this algorithm (like academia itself) does not very well favor introduction of new ideas or new thinkers. :-)

Seriously, though, by design this will never show you obscure stuff, not to mention information that researchers found but never published.

What did I learn? Most of all I got to meet Laurie Edwards - I'd never heard of her! How could that be?? (!aChronicDose).

And I got to see the gorgeous ring on newlywed Alicia's hand! Doncha love it when someone beats cancer 3 times (at a young age) and goes on to a major milestone like that? That's what it's all about.

Paul Levy said...

As far as how to engage the docs, I think the docs really want to know what EXACTLY it is that the e- patient wants! The more you can have rational, logical (e.g. not ranting) patient advocates going to community hospital grand rounds, asking to attend tumor boards about their own cases, speaking at physician-attended national meetings, going to specialty societies, etc., the more reassured I think the docs will feel. And I don't just mean patient-centered meetings, because the only docs who go there are the ones already converted. They need to reach the ones in the trenches, including the ER's.

Can doctors like Danny Sands, who gets this, help teach patients what is effective?

Anonymous said...

As far as how to engage the docs, I think the docs really want to know what EXACTLY it is that the e- patient wants! The more you can have rational, logical (e.g. not ranting) patient advocates going to community hospital grand rounds, asking to attend tumor boards about their own cases, speaking at physician-attended national meetings, going to specialty societies, etc., the more reassured I think the docs will feel. And I don't just mean patient-centered meetings, because the only docs who go there are the ones already converted. They need to reach the ones in the trenches, including the ER's.

Can doctors like Danny Sands, who gets this, help teach patients what is effective?

Alicia C. Staley (@stales) said...

It's been a few weeks since the dinner, and I'm still thinking about the great conversations from that evening.

I look forward to more conversations like this - there needs to be more work like this done on many fronts.

All the best!