As I’ve mentioned before on this blog, though healthcare companies (like Johnson & Johnson) would like to take a more active role in the ongoing conversations online, most are still sitting on the sidelines. Why? Well, there are a number of reasons, but one of the biggest is that there is quite a bit of uncertainty about just what is appropriate under the current regulatory framework.

It’s all rather complicated, but in the US a lot of the uncertainty around how to engage online concerns how companies that sell highly regulated prescription medications and medical devices can do so and still meet their regulatory requirements to 1) report any side effects that people may experience while taking their products and 2) to ensure they don’t promote their products beyond what is covered in their approved product label. It may sound relatively straightforward, but the reality is that these requirements cause pause since there is no clear guidance from the regulator about what behaviors or approaches are frowned upon and which are acceptable.

This uncertainty has not gone unnoticed, and for the past two days the FDA has held a hearing on the subject. I’ve been sitting in a crowded (and increasingly hot) conference room WITHOUT WiFi watching a steady stream of presentations. It’s been an interesting series of presentations so far – and it will take a while to digest all that has been discussed.

For those unable to be at the hearing or watch the webcast, some of the presentations and testimonies made can be found over at Health Central. You can also follow the flow of information from the two-day meeting on Twitter at #FDASM. I’ve also been noticing some interesting posts on the events over the past two days from Mark Senak over at Eye on FDA.

Between suggestions for different regulatory approaches, thoughts around how technology can be used to spread information and discussions about who is responsible for what, one theme kept recurring –that through responsible engagement, companies can help address and even correct misinformation about their products online. This ultimately could help patients and physicians make informed health decisions.

Hearing this theme come up again and again made me smile. You see, when the hearing was announced, it set off a flurry of meetings and discussions with people from throughout Johnson & Johnson – from legal, regulatory, public affairs and marketing — to determine whether we would participate in the meetings and, if so, what we would say.

Though there was a lot of back and forth, one thing was clear to us – that the Internet and social media play an enormously important role in public health and health literacy and that through responsible behaviors and actions companies can – and should – help address confusing or inaccurate information online. We wanted to advocate for flexibility in the regulatory approach to online content so that companies can participate more fully, and in so doing add their voices to the online conversation with the benefit of helping to advance health literacy by providing accurate and credible product information in real time. By speaking at the hearing, we felt we could share some of our ideas about how companies like Johnson & Johnson could engage responsibly in this space.

And so yesterday, Liz Forminard from Johnson & Johnson’s legal department and Philomena McArthur from regulatory affairs for our pharmaceuticals group, stood before the FDA’s panel and provided some thoughts on behalf of the company.

What did they say?

Well, the transcript will be captured in the docket, but I thought I’d highlight a few things they touched on:

• Companies should not be held responsible for policing the whole of the Internet.
• There should be some flexibility in regulatory approaches online, and for more opportunities to take advantage of technological resources to get people accurate, credible and current information where and when they need it.
• Having clarity in regulatory approach to social media is critical to enable participation from healthcare companies that provide a valuable source of product information

There was, of course, much more said – but I think the key to all of this will be an ongoing dialog between companies, patients and the regulator to develop workable – and flexible — approaches that will enable companies to be part of this conversation.

You have to watch out for my colleague Rob Halper when he has a camera in his hand. During last week’s BlogWorld conference in Las Vegas, Rob was roaming the halls, looking for a chance to capture the event on film. Luckily he had a chance to interview Kim McAllister from Emergiblog who, along with Dr. Val Jones, organized the day. Check it out:

Last week, I was in Las Vegas to attend BlogWorld where Johnson & Johnson was one of two corporate sponsors of the event’s first-ever track on MedBlogging. Kim McAllister, one of the organizers of the Medblogging track, has a great synopsis over at Emergiblog, and together with Dr. Val Jones , pulled together a thoughtful series of panels throughout the day that drew some of the high rollers in medical and healthcare blogging from throughout North America — and even one, Bongi, who came all the way from South Africa!

As is often the case with these kinds of gatherings, it was great to finally put faces to names – and to see that the online personalities that they project through their blogs was a pretty dang close match to who they are in real life.

I had a chance to say a few things as part of a panel, alongside Paul Levy of Running a Hospital fame, who joined us virtually and Bob Stern from our co-sponsor, the medical news site MedPage Today, during our panel on “The Value of Blogs To Hospitals, Industry, and News Organizations.” Thanks to masterful moderating by Professor Gary Schwitzer whose Health News Review does its best to encourage responsible healthcare reporting, we covered a fair amount of ground — moving from how we each got involved, to covering some of the complexities associated with rolling the dice to make our blogs and sites a reality.

Though much was discussed throughout the day, one theme just kept coming up again and again — and that was what could all of us do to help ensure the accuracy of healthcare information that is available online. According to a recent report by Pew Internet & American Life, 61% of Americans go online for health information and of those, a majority access user-generated-health information when making decisions about their healthcare needs. But, unfortunately, much of what is spread online is misleading or in some cases completely unsupported by scientific or medical knowledge, a fact that Dr. Val Jones made clear during the panel she hosted.

As I sped back East after the conference, a couple of thoughts kept rattling around in my brain concerning what we all can do to try to encourage the spread of useful, scientific information:

1) While the online world is often a great source for medical information, there is a lot of misleading information out there.
2) There is more that medical professionals and others who have some scientific knowledge and information can do to provide clarity around confusing and often conflicting information about different medical conditions.
3) Companies that likewise have data and information should also be part of these discussions in some way.

Now, given it was just a one-day meeting, no real solutions were agreed upon. But based on the conversations that I had with some of the folks there, there seemed to be a consensus that we should all meet again, perhaps at a similar event, to discuss more that we can all do together. Suggestions for locations and approaches are welcome!

I’m sure there are other accounts of the MedBlogger track that I’ve failed to include, but below are a few that provide a nice synopsis:

KevinMD: Scenes from BlogWorld Expo 2009 and the Future of Medical Social Media
Dr. Anonymous: BlogWorld 09 HIPAA and Blogging

Oh and special thanks for making this event great also goes to Dr. Ramona Bates who create a quilt that everyone in attendance signed!

UPDATE:

Here’s another post on the MedBlogging track — this time from Dr. V — Medical Blogosphere Rising.

Marc recently wrote about the progress Johnson & Johnson has made in engaging with people in the social media realm (such as the Kilmer House blog, the Johnson & Johnson health channel on You Tube, and the Twitter account) and lessons learned along the way. As Marc says:

“As a company that sells not only consumer products, but also prescription medicines and medical devices, there were numerous legal and regulatory hurdles that needed to be taken into account. But we realized early on that it is only by jumping in that you can learn— and we are learning every day.”

Many of our operating companies have also found ways to get involved in social media initiatives. When I found out that DePuy Mitek is using Twitter to reach golf players and fans with health and fitness updates, I had to check it out. I was also interested on a personal level, because my husband loves to golf, but I don’t know much about helping him stay in good shape for his game beyond slipping sunscreen in his bag when he heads outside.

DePuy Mitek is the official mobile health and fitness provider of the PGA Tour and Champions Tour, which means they provide players with on-site rehabilitative and preventive care and educate fans. From their unique position at the tour, they are using Twitter to inform attendees about events, such as opportunities to have a photo taken with a replica of the Charles Schwab Cup or the FedEx Cup. They share with their followers on Twitter the same tips they give to on-site pros and fans: techniques to improve your swing, how to find the right golf shoes, and other info to keep your body and your game in prime form.

For those of you who don’t golf but stay active in other ways, they also tweet about maintaining joint health, preventing and treating knee pain, and how to detect the early symptoms of osteoarthritis (which I’ve learned from a recent tweet is the number one cause of disability in the US).

You can follow on Twitter at NSM_GolfTour

Read Marc’s article on social media here

From Brian Kenney, Senior Director, Corporate Communications, Centocor Ortho Biotech Inc.

 

Today’s blogosphere provides vivid personal accounts about the realities of what it is like to live with a chronic condition like rheumatoid arthritis (RA). There exists a very active community of RA bloggers (such as All Flared Up, The Single Gal’s Guide to Rheumatoid Arthritis, Rheumatoid Arthritis Guy, and Rheumatoid Arthritis Warrior) who share perspectives and questions about many related topics.

 

Listening to the perspectives of this social community has helped us to understand more about how RA can affect a person’s quality of life. For example, everyday activities that most of us take for granted – participating in family or work activities, spending time with friends, dating, exercising – can be daunting when someone must contend with stiff, swollen and painful joints routinely, and untimely flares of such symptoms.

 

There is a new online talk show, New Way RA™, that focuses exclusively on addressing topics of overall health and well-being for people living with RA. The show provides expert advice and practical information through an engaging and accessible web-based format. Visitors to the site can view the entire show online, listen to real-life anecdotes from people living with RA, register to receive a free copy of the DVD, and access resources for more information. (Full disclosure: the project is sponsored by Centocor Ortho Biotech Inc).

 

We hope that people living with RA, as well as their caregivers, find New Way RA helpful in answering some questions they may have about their overall well-being, and that this program will further raise awareness about a chronic disease that affects more than one million Americans, the majority of whom are women.

 

You can watch the show and learn more at http://www.newwayra.com/.

 

For more information about RA, check out CreakyJoints and the Arthritis Foundation.

Many of you know that my colleague Margaret blogs about Johnson & Johnson’s history at Kilmer House. But what you may not know is that Kilmer House was also the company’s first foray into the blogosphere in July 2006. In honor of the 3^rd anniversary, and with the same trailblazing spirit, Margaret created the first history vlog post for Kilmer House.

 

Margaret gives viewers a chance to see some New Brunswick, New Jersey landmarks and shows us what Johnson & Johnson looked like more than a century ago. I was surprised to learn that I am actually looking at some of these existing landmarks every day on my way into work.

 

My favorite part is Margaret’s tour of the Kilmer House museum that houses some of the products from the early days of the company. You’ll have to watch the video to see how a roll of adhesive tape saved a man’s life in a most unexpected way…

This week, a new video is featured on the Johnson & Johnson health channel on YouTube about living with cancer.

The first video in the three-part series tells the story of a social worker and oncologist who found themselves in the roles of patient and caretaker. I thought it provided a unique insight into what it is like to receive a diagnosis of cancer as a professional in the health care field who works with cancer patients every day.

In the videos, Dr. Val Jones (founder of the blog Better Health) talks with a woman named Hester who spent about 15 years as a social worker at a Boston hospital counseling people with cancer. Hester thought she knew what it felt like to face a diagnosis of cancer…that is, until she herself became the patient. The reality of hearing the diagnosis, having to tell her loved ones, and facing treatment gave Hester an entirely different point of view on what it is like to live with cancer.

Her husband, an oncologist who works at the same hospital, developed a profound understanding of what partners and spouses experience when they watch a loved one cope with cancer. Watching this story, I realized that no amount of medical training can prepare you for being on the other side of a cancer diagnosis. However, for these health care professionals who had devoted their working lives to helping people with cancer, the disease touched their lives in an unexpected way and gave them a different perspective on patient care.

Parts Two and Three of the video series are also available to view.

After we launched the Johnson & Johnson health channel on YouTube in August of last year, one of the first videos I posted was a series on ADHD which was originally produced by Dr. Nancy Snyderman. The first part called ADHD: A Child’s Diagnosis told the story of Davina Beacham, a 37 year-old artist whose oldest son Brad was recently diagnosed with ADHD. During the course of this diagnosis, Davina discovered that she too had ADD (without the hyperactivity).

Now Davina is a frequent visitor to social media sites like YouTube, and when she saw that the video she was featured in was running on the Johnson & Johnson health channel, she felt compelled to leave a comment. When I saw her comment, I contacted her and asked if she was interested doing a follow up video. We decided that we would, and so I grabbed a cameraman and drove up to Dover, MA, to visit Davina at her home. She and her family were extremely gracious, and we did interviews with Davina, her husband, Hal, and her two boys Brad and George.

Subsequent to the original video two years ago, she also learned that George, her younger son, was diagnosed with Asperger’s Syndrome as well as ADHD. Despite all the complications and challenges posed by this situation, what impressed me most was the openness, patience and understanding that Davina showed her two boys, always emphasizing and nurturing their creativity and expressiveness. Her husband Hal, the only member of the family without ADHD, showed a similar patience, embracing the situation, rather than resisting it.

I’m very happy with the video stories that were the result of this visit. And I left the two boys with flip cameras. I WAS going to leave one for both of them to share, but I found out VERY quickly that wasn’t going to work! The idea is for them to record a kind of video diary of their very interesting life, which I would then post on the JNJhealth channel. I’m looking forward to these, and I’m sure they will be as interesting and gratifying as our own experience videotaping this wonderful family. Here are the links to the current videos:

Davina, Part One
Davina, Part Two
Brad
George

JNJBTW received a shout out the other day from one of our nation’s leading newspapers. But it wasn’t the kind of mention of the blog that I felt all that good about. The article concerned how pharmaceutical companies were turning to social media as a way to reach their customers, and listed JNJBTW as one of many examples of how companies were on the social web. It’s a trend we’ve noticed as well, and given the growing number of people who go online for health information, one that will continue. (Note to the Washington Post – Johnson & Johnson isn’t a “pharmaceutical” company – we have substantial medical device and consumer businesses as well. ) According to the paper:

Johnson & Johnson also hosts a blog (http://www.jnjbtw.com) that is largely self-congratulatory about what the company is doing (see “Giving Back Image of the Week”). But it recently had a couple of interesting tidbits, including a J&J expert on the value of corporate wellness programs and a series of tips on keeping kids safe from injury.

I’m glad the writer found the tips from Dr. Isaac and from Safe Kids to be of interest, but I was disappointed to hear that she found the blog – and in particular the Giving Back Image of the Week – to be “self-congratulatory.”

Through JNJBTW I had hoped to provide some of those folks in the corporation who are usually silent an opportunity to be heard and to engage with others online. I’ve encouraged people to use it to tell their stories, share their perspectives on different topics that are of importance to them and try to connect with others online. I don’t think the folks posting on the blog meant to give themselves a “pat on the back,” but were instead posting to share their experiences with others.

The same holds true for the Giving Back Image of the Week. When Shaun Mickus and I discussed his interest in posting the photos, I know he felt it was more about highlighting the efforts of the charitable organizations we happen to partner with than talking about our company’s support. I think our hope was that we would encourage others to learn more about the activities of these organizations.

Clearly there is room for more “interesting tidbits” and other useful information on corporate blogs like JNJBTW, but I also think there is space for people at companies to blog about what they are doing and who they are working with.

Wednesday night, Rob Halper and I hosted another of our blogger dinners — this time in NYC.

The conversations we had at Piano Due (which served a really nice porcini mushroom ravioli course) spanned a variety of subjects — from how to monetize a Twitter account to dogs. John Mack, who was one of our guests, posted a nice wrap-up of the conversations that went on at HIS end of the table — which appeared to mostly focus on steps that can be taken to improve the accuracy of online health information.

At the other end of the table, there were discussions about the ROI of social media sites and expanding the awareness of social media efforts. Oh — and there were several conversations about dogs.

So what did I take away from all the socializing? Well, I picked up quite a bit, but one point stuck out in my mind — that ensuring the accuracy of healthcare information online is crucial — and that one of the best ways to do so is to encourage numerous stakeholders to enter the conversation. According to John’s summary of the discussion:

For patients, the best, safest, and most accurate health information is available through social media (eg, discussion boards, blogs) that are populated by a variety of stakeholders: patients, physicians, caregivers, etc.

I agree. But that can only be accomplished once more of these stakeholders overcome objections by dispelling perceived risks — and mitigating real risks — to jump into discussions on different healthcare topics. There is clearly much that needs to be done before this can be achieved.

I’d like to thank all of our guests for joining us and making this a great evening.