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      <title>The Health Engagement Blog</title>
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      <description>The Health Engagement Blog</description>
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      <copyright>Copyright 2010</copyright>
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         <title>WILL THE MEDICINES AUSTRALIA CODE OF CONDUCT (EDITION 16) GIVE THE INDUSTRY GREATER CONFIDENCE TO USE DIGITAL MEDIA?</title>
         <description>Edition 16 of the Medicines Australia Code of Conduct, which sets the ethical standard for the marketing and promotion of prescription medicines in Australia, came into effect from 1st January and gives further guidelines on using digital media. 

The changes are part of an 18-month consultation process with patient groups, consumer organisations, healthcare professionals, colleges, professional associations, academics and other stakeholders. But will these changes give the pharmaceutical industry greater confidence in using digital media? 

A recent Edelman Australia survey of marketing and communications professionals found that 70 per cent would use digital media more if Medicines Australia gave clearer guidelines about online activity. 38 per cent said reporting adverse events online discouraged them from engaging with HCPs and patients online, while a further 9.5 per cent ‘didn’t know’.

It is hoped Edition 16 gives the pharmaceutical industry greater confidence in using digital media. Otherwise, the trust and transparency a company needs to operate will decline and incorrect information about products and companies in Australia will have the opportunity to flourish. 

A Pew study found that 60 per cent of people searching for health information online say the information they find affects their decisions on how to treat an illness or condition. Therefore, there is a need for credible, authentic, trustworthy health information online.

We cannot prevent humans from wanting to interact and share information, but we can make sure they can easily access correct information. Pharmaceutical companies have deep information about specific disease states that would be of value to people looking for health information online. 
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         <link>http://www.engageinhealth.com/2010/02/will_the_medicines_australia_code_of_conduct_edition_16_give_the_industry_greater_confidence_to_use_digital_media.html</link>
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         <pubDate>Sat, 06 Feb 2010 20:20:51 -0500</pubDate>
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         <title>Public Expects Business Contributions to Health Solutions</title>
         <description><![CDATA[<em>Shellie Winkler, who spearheaded the Health Engagement Pulse, shares a perspective on what the public expects of American business.  Shellie is EVP/Group Leader, Corporate & Financial Communications and EVP, Health, Corporate & Public Affairs with Edelman, New York.</em>

The business community recognizes it has a role in improving health.  Traditionally, many businesses viewed strong employee wellness programs and operating practices that ‘do no harm’ to the health of their communities as enough of a contribution.  Now, <a href="http://www.thehealthcareblog.com/Edelman%20Health%20Engagement%20Pulse%20Dec%202009.pdf">findings from our Health Engagement Pulse</a> suggest Americans look to business to do much more, in ways that businesses may not have previously considered imperative.   

Conducted in November 2009, the Health Engagement Pulse indicates businesses may be obligated and expected to partake in health solutions.  Things like sharing knowledge and innovations to improve health shift from ‘nice to have’ to ‘must do.’  The findings also signify there is a stark difference between where Americans think businesses currently are engaging in health and where they think they should be – according to the Pulse, only about one in 10 Americans think business is doing an excellent or very good job on health issues they deem important.  

It’s only logical that Americans will reward companies they believe are actively engaging in health.  To me, this means businesses have an opportunity to improve not only our country’s health but the health of their business, as people may be more likely to purchase from, recommend and invest in companies that act on health issues.

A few statistics from the Pulse to illustrate: 
• 81 percent of Americans think it is important for business to share knowledge or innovations that improve health, yet only 11 percent think business is doing an excellent or very good job at this
• 73 percent of Americans believe it is important for business to help employees lead healthier lives, yet only 10 percent believe business is doing an excellent or very good job at this 
• 86 percent would be likely to purchase from a company that is committed to engaging in and improving health 
• 72 percent would be likely to invest in a company that is committed to engaging in and improving health

It will be interesting to watch businesses extend their health engagement practices and see how their performance and reputation evolves.  We invite you to give the <a href="http://www.thehealthcareblog.com/Edelman%20Health%20Engagement%20Pulse%20Dec%202009.pdf">survey results </a>and <a href="http://www.edelman.com/insights/ShowOne.asp?ID=204">press release </a>a full read, and let us know what you think.  ]]></description>
         <link>http://www.engageinhealth.com/2010/01/public_expects_business_contributions_to_health_solutions.html</link>
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         <pubDate>Tue, 19 Jan 2010 13:32:16 -0500</pubDate>
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         <title>Health Engagement Pulse Chatter</title>
         <description><![CDATA[Hope you had the chance to take a look at our <a href="http://www.thehealthcareblog.com/Edelman%20Health%20Engagement%20Pulse%20Dec%202009.pdf">Health Engagement Pulse survey results</a>. If you’re keen and curious for additional thoughts, take a look at what’s being said across the digital wires by <a href="http://www.prweekus.com/pages/login.aspx?returl=/americans-expect-business-to-play-greater-role-in-health/article/160091/&pagetypeid=28&articleid=160091&accesslevel=2">PR Week’s Jaimy Lee</a>, <a href="http://www.cnbc.com/id/34573230">CNBC.com’s Christina Cheddar Bark</a>, <a href="http://www.thehealthcareblog.com/the_health_care_blog/2010/01/nancy-turret-edelman-health-is-the-new-green.html">the HealthCareBlog.com’s Matthew Holt</a>, and <a href="http://getbetterhealth.com/tag/health-engagement-pulse">GetBetterHealth.com’s Val Jones</a>.]]></description>
         <link>http://www.engageinhealth.com/2010/01/health_engagement_pulse_chatte.html</link>
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         <pubDate>Tue, 12 Jan 2010 10:25:51 -0500</pubDate>
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         <title>Launched: Edelman Health Engagement Pulse</title>
         <description><![CDATA[Take a look at the <a href="http://www.edelman.com/insights/ShowOne.asp?ID=204">press release </a>and <a href="http://www.thehealthcareblog.com/Edelman%20Health%20Engagement%20Pulse%20Dec%202009.pdf">presentation</a>.

 We're keen to hear your take on the results, so please do share your thoughts.]]></description>
         <link>http://www.engageinhealth.com/2009/12/launched_edelman_health_engage.html</link>
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         <pubDate>Thu, 17 Dec 2009 12:25:22 -0500</pubDate>
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         <title>Engagement: An Example to Watch</title>
         <description><![CDATA[Engagement has become the new buzz word in health today.  But, for us at Edelman, engagement is more than just a new trend.  For a number of years, we have made the concept of engagement as a central guiding principle for our work in health communications.  In fact, we use it so frequently to talk about what health consumers want, what we do as communicators, and how we define success that we undertook our own ongoing proprietary research on the topic via our <a href="http://www.engageinhealth.com/docs/Edel_HealthBarometer_R13c.pdf">Health Engagement Barometer</a>.  Still today, as we talk to clients and friends about our vision, we sometimes get puzzled looks and questions about the real meaning of engagement.

Now, a recent development in the growing online community of health consumers and physicians gives us a tangible example of what health engagement may look like in the near future.   

In recent months, the online health community has taken a significant step in its evolution with the creation of the <a href="http://participatorymedicine.org/">Society for Participatory Medicine </a>and its launch of the <a href="http://jopm.org/index.php/jpm">Journal of Participatory Medicine</a>.  

We all know the statistics that show a vast number of individual health consumers and some medical professionals have long been users of online information and have participated in advocacy and education forums to share information and experiences.  However, with the launch of the society and the journal, the online health community has matured and is being led forward by a distinct group of key influencers collaborating on a mission:  to encourage more participatory medicine and change the norms in the delivery of care.  These influencers are making their voice heard and creating a movement for health consumers who seek a more engaged way of working with medical professionals. 

Members of the society are <strong><em>both </em></strong>patients who have harnessed the power of information to actively manage their own health <strong><em>and </em></strong>forward-thinking medical professionals supportive of a new collaborative model of health care and shared decision making.  (<a href="http://e-patients.net/archives/2009/11/why-participatory-medicine.html">Dr. Danny Sand’s post </a>gives a great perspective on participatory medicine from a physician’s point of view.) That’s a far cry from the pattern of patients trolling Web sites in isolation to bring information to their physicians, who have then worked on their own to either validate or discount patient-provided information.

For communicators, this community will be one to follow to better understand health consumers – especially their preferences for patient-physician collaborations, information sharing and making decisions about managing their health.  Also, organizations and professionals who have thoughtful contributions to make to the community’s discussion will likely be rewarded with feedback and relationships that may help shape future decisions about models of care delivery.

The society may be launching with a small group of key influencers, but if the momentum coming out of the recent <a href="http://epatient2009.com/">e-Patient Connections</a> conference held in Philadelphia is any indication, there is a huge appetite among health consumers for such new models of collaboration.

That’s a model to watch in the new world of health engagement. ]]></description>
         <link>http://www.engageinhealth.com/2009/12/engagement_an_example_to_watch_1.html</link>
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         <pubDate>Wed, 02 Dec 2009 13:42:46 -0500</pubDate>
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         <title>Transparency in Demand</title>
         <description><![CDATA[<a href="http://www.californiahealthline.org/articles/2009/12/2/study-many-calif-hospitals-not-offering-transparent-price-data.aspx?utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+CaliforniaHealthline+%28CHL%29">Today’s news </a>of a <a href="http://www.rand.org/health/abstracts/2009/mehrotra2.html?ref=homepage&key=t_pre_surgery">Rand study </a>on California hospitals’ price transparency as well as this weekend’s <a href="http://www.nytimes.com/2009/11/28/health/28patient.html?_r=1&partner=rssnyt&emc=rss">New York Times article </a>on emerging online services to help consumers compare medical service pricing shine a spotlight once again on the issue of transparency in health care.  And, the news serves as an alert for health communicators that the issues of reporting and transparency are ready to emerge in earnest as key topics for consumers.

Discussions about reporting of data -- both for pricing and outcomes -- have been happening for some time among industry insiders without much impact for consumers.  In fact researchers for years have studied the effects of outcomes data reporting and found little conclusive proof of a connection to health consumer behavior.

But now, as the <a href="http://www.nytimes.com/2009/11/28/health/28patient.html?_r=1&partner=rssnyt&emc=rss">Times’ article </a>describes, people are paying more out of pocket for health care.  That economic reality is spurring them to seek information on health care pricing – and a similar quest for outcome and quality data is sure to follow.

We as communicators will have to find ways of helping organizations navigate this topic to meet consumer need while also addressing the complexity of reporting data.  Data is never straightforward as much as we would like it to be.  We’ll need to tackle challenges of data time lags, accuracy of self-reported information and apples-to-oranges comparisons just to mention a few topics.  That’s even more reason for communications teams to start now and take the lead in figuring out approaches to making data reporting meaningful and clear.

The key will be to make sure we’re always keeping in mind the topic from a consumer point of view.  A Robert Wood Johnson Foundation <a href="http://www.rwjf.org/files/research/051508.policysynthesis.qualityinfo.brief.pdf">policy brief </a>from last year gives a great road map to actions to consider for better transparency on outcomes data, and the same principles can also apply to presentation of pricing information.  The RWJF authors emphasize that the keys to helping consumers make informed decisions using data are that the information is: relevant, widely known to be available, delivers value and accurately identifies high quality providers. By following these principles, provider organizations can help consumers navigate through a sea of data and measures that can be complicated and confusing even for industry insiders.

So, is your organization ready for consumer demands for transparency?  Ask yourself:

1.)	Does your organization regularly report outcome data and industry rankings – both good and bad?

2.)	Does your organization have published goals and philosophies on how it shares comparative data?

3.)	Have you benchmarked yourself against peer organizations? And have you shared findings with employees, patients and consumers?

4.)	How do you help consumers make sense of the outcome and pricing data that is already available?

5.)	What would happen if a patient contacted your organization asking for more information on pricing or outcome data?  Also, are you prepared for an investigative reporter or blogger inquiry on these subjects?

Proof of consumer interest in comparative data may have been thin in years past, but economic pressures and market-driven change is making transparency a key issue that health communicators must prepare to address.
]]></description>
         <link>http://www.engageinhealth.com/2009/12/transparency_in_demand.html</link>
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         <pubDate>Wed, 02 Dec 2009 12:20:03 -0500</pubDate>
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         <title>Health is mighty personal</title>
         <description><![CDATA[<a href="http://online.wsj.com/article/SB10001424052748704204304574543883061080714.html">This</a> WSJ article, despite its focus on US health reform, offers evidence that health is mighty personal. The leaders of three top global health enterprises (Cosgrove of Cleveland Clinic; Vasella of Novartis; and Williams of Aetna) provide commentary that the WSJ summarizes in  five recommendations. However, I found just as interesting the interstitials in their comments -- showing not only what they see as important but how very personally and "close to home" these CEOs view  the questions of health.  Here are few notable quotes:
 
-     Dr. Cosgrove: Let me just step in for a second and say I think that this group has an enormous opportunity in terms of putting the incentives right for employees in terms of wellness… [that] corporate leaders can really change this is very clear. We've done a number of things at the Cleveland Clinic amongst our employees. So far, since we started our [wellness] program, we've lost 120,000 pounds.
 
-     Dr. Vasella: We are looking forward to a generation who may live shorter than we do unless action is taken. The question is also, what do we do as companies to address this problem and make it easier for our employees to live a healthy lifestyle?
 
-     Mr. Williams: In our own company, in the group setting, for example, we give our employees a discount if they are a nonsmoker on their premium that they pay as a percentage of their health insurance. We also will pay all the smoking-cessation costs, and if you quit during the year, then we will give you the nonsmoking rate. So I think the objective in these things has to be to not be punitive; it has to be to help people get to a state where they really are doing things that are supportive of good health.

Of comparable import, I wanted to draw attention to a significant point that’s missing from the conversation. Among the WSJ recommendations is “holding patients accountable”. Separately, there’s “promote integrated care”.  These are currently disparate, and employers should recognize that chasm. The magic – better health outcomes, lower costs, greater satisfaction, and improved public health in aggregate – happens when patients/people and their providers partner, with mutual accountability.   Anything less is not consistent with our health engagement message of <a href="http://www.chcf.org/topics/chronicdisease/index.cfm?itemID=134063">participatory health</a> – that it’s not just carrots and sticks for patients to care for themselves, but to partner with providers. 

Take a full read, and let me know what you think.
]]></description>
         <link>http://www.engageinhealth.com/2009/11/health_is_mighty_personal.html</link>
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         <pubDate>Mon, 30 Nov 2009 15:14:28 -0500</pubDate>
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         <title>Edelman Australia wins best PR Initiative at ASMI 2009 Awards</title>
         <description>Edelman Australia with Reckitt Benckiser won the award for the best PR initiative at the Australian Self Medication Industry Awards on 12 November for the Manage Pain – effectively, safely, responsibly pharmacy education campaign.

The Manage Pain campaign was developed on behalf of Reckitt Benckiser, manufacturers of Nurofen Plus, to give pharmacists a suite of materials to help Australians take pain relievers that contain codeine appropriately.

The campaign was developed in conjunction with a range of stakeholders and was endorsed by the Pharmacy Guild of Australia and the Pharmaceutical Society of Australia.

In an era of Public Engagement this was more the just a one-off campaign. The award is the culmination of years of hard work by Edelman, RB, and the sphere of stakeholders who all invested time to ensure the quality use of medicines in Australia. 

Indeed, empowering stakeholders is fundamental to the success of every campaign; consulting with interested parties and being flexible enough to adapt based on evolving insights. 

The Manage Pain campaign also used a range of mediums to reach its audiences with digital media, point-of-sale reminders, pharmacy staff cards, as well as traditional media outreach successfully used. 

Well done the team responsible; Helen Paynter and Linda Duffy. </description>
         <link>http://www.engageinhealth.com/2009/11/edelman_australia_wins_best_pr_initiative_at_asmi_2009_awards.html</link>
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         <pubDate>Sun, 29 Nov 2009 21:21:28 -0500</pubDate>
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         <title>Edelman Report on FDA Hearing</title>
         <description><![CDATA[Following last week's FDA hearings, we know we probably won't hear guidance from the FDA for a year or so. In the interim, we must continue to rely on past experience, existing <a href="http://www.fda.gov/AboutFDA/CentersOffices/CDER/ucm090142.htm">DDMAC guidance</a>, and what we heard from those who testified.

Edelman has long counseled companies that health is a business imperative and that they must engage proactively, transparently, and in real time with all stakeholders about health and  wellness. We recognize the challenges manufacturers have faced in the past decade in engaging online because of the lack of regulatory guidance. And we believe this hearing will ultimately—though perhaps not immediately—make a significant difference in the way manufacturers communicate online.

We have created a <a href="http://www.engageinhealth.com/Edelman_FDASM_Report.pdf">report</a> which summarizes the issues and provides guidance to manufacturers on how to engage in online communications now. We believe it is imperative that companies engage with their customers and stakeholders, not postpone engagement until final guidance is received from the FDA.

We continue to work on our written testimony and encourage others to do so as well. As a reminder, the FDA is accepting these through February 28, 2010.]]></description>
         <link>http://www.engageinhealth.com/2009/11/edelman_report_on_fda_hearing_1.html</link>
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         <pubDate>Fri, 20 Nov 2009 14:52:51 -0500</pubDate>
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         <title>Why I Fight for Preemies</title>
         <description><![CDATA[Today is Prematurity Awareness Day. Unfortunately, the <a href="http://www.marchofdimes.com">March of Dimes</a> recently released its second annual <a href="http://www.marchofdimes.com/prematurity/index_map.asp">Premature Birth Report Card</a> and America scored a depressing “D.” What that means is that every year, we’re failing more than half a million babies.

Premature babies are special to me for a couple of reasons. I volunteered at <a href="http://www.parklandhospital.com/">Parkland Hospital</a> in Dallas for five years in the Neonatal ICU. As a volunteer, I held and comforted these little ones, feeding them, changing diapers or just rocking them to sleep. I saw the dedication of the nurses and doctors, the incredible stress the parents were under, and of course, the struggle these tiny babies faced being born too soon. Unlike my initial suspicions, most of these babies weren't born too early because of drug-addicted mothers or lack of prenatal care. Often, babies are born premature, and we don't know why.

And my second reason for caring is even closer to my heart. My twin niece and nephew were born premature at 36 weeks. They were in the NICU for about a month before coming home, and today they are happy, healthy 6-year-olds, not to mention extremely smart and attractive. (Hey, I'm a proud auntie!)

Although medical advances give even the tiniest babies a chance of survival, for many babies premature birth is still a life or death condition. It’s the #1 cause of death during the first month of life. And many babies who survive face serious health challenges and risk lifelong disabilities.

<a href="http://marchofdimes.com/prematurity/index.asp">Learn more</a> about how you can help.]]></description>
         <link>http://www.engageinhealth.com/2009/11/why_i_fight_for_preemies.html</link>
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         <pubDate>Tue, 17 Nov 2009 15:34:03 -0500</pubDate>
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         <title>An Edelman Report: Day 2 of the FDA Social Media Hearing</title>
         <description><![CDATA[The <a href="http://www.fda.gov/AboutFDA/CentersOffices/CDER/ucm184250.htm">FDA’s social media hearing</a> concluded today with a second round of testimony on the challenges surrounding online promotion of health information. The morning session focused on adverse event (AE) reporting, while the afternoon session supplemented yesterday’s discussion of manufacturer accountability, real-time information, corrective information, and use of links. (<a href="http://www.engageinhealth.com/EDELMAN SUMMARY - Day 1 FDASM.pdf">Our Day 1 summary is available here.</a>) Yesterday’s hearing received significant media coverage and we expect the same for today’s panels. 

Following is a top-line overview of common themes from today’s testimony and some of the recommendations put forth.  

<strong>Challenges and Solutions in Online Adverse Event Reporting</strong>

<em>Common Themes and Consensus</em>

Several presenters noted that because of unclear guidance around AEs, companies are turning their heads and not engaging. David Saggio from LehmanMillet said the industry is “paralyzed,” while John Mack of Pharma Marketing News referred to a “see no evil, hear no evil” approach.
 
Echoing yesterday’s discussion of responsibility, most speakers said it is impossible for the pharmaceutical industry to police the entire Internet for potential AE reports due to the sheer volume of information. PhRMA’s Jeffrey Francer reminded us that current industry guidelines say manufacturers should monitor their own Web sites but not external ones, and that if companies become aware of AEs on any site, they must address them. 

HealthCentral’s Chris Schroeder called for greater clarity around the definitions of ownership and sponsorship and posited that advertising on a site does not make a company responsible for reviewing it for AEs. Steven Findlay of Consumers Union held that while companies can’t be accountable for the entire Web, they should take on some degree of voluntary monitoring. And Heartbeat Digital’s Bill Drummy said once companies begin monitoring, they have a responsibility to correct misinformation and report AEs.

Nearly everyone agreed that a major challenge in online AE reporting is that only a small fraction of events discussed online qualify as reportable. (A reportable AE must have an identifiable patient, reporter, event, and drug. Learn more from our blog.) Several speakers quoted Nielsen Online’s figure that only 1 in 500 online AEs is reportable. So the question is: How far are companies expected to go to obtain the information that would make AEs reportable? And would this search violate patient privacy—the very thing that attracts so many people to the Internet? According to WEGO Health’s testimony, about half of health activists say companies should respect people’s privacy and not probe for AE information, but about half also say that every effort should be made to track down this information. 

<em>Several recommendations were made by presenters, and a detailed breakdown is available <a href="http://www.engageinhealth.com/EDELMAN%20SUMMARY%20-%20Day%202%20FDASM.pdf">in the full report</a>.</em>

<strong>Additional Testimony on First Four Topics</strong>

This afternoon’s testimony largely mirrored yesterday’s themes. Speakers continued to note that the pharmaceutical industry needs adaptable Internet-specific guidelines as soon as possible. 

Highlights from the afternoon session include (a greater summary is available in the <a href="http://www.engageinhealth.com/EDELMAN%20SUMMARY%20-%20Day%202%20FDASM.pdf">report</a>):
<ul><li>The downsides of manufacturers correcting inaccurate information online;
<li>The challenges of inaccuracies on third-party sites and handling user-generated content;
<li>How manufacturers could engage in social media; and
<li>The value of direct communication with physicians.</ul>

<strong>What Happens Now?
</strong>
Unlike other FDA hearings, this one was not meant to end with an immediate vote or decision. In his closing statement, the FDA’s Thomas Abrams admitted that the agency has "much work to do" to understand the interactive medium. He also noted that the FDA will accept written testimony on these topics through February 2010. The agency will then reflect on the considerations and recommendations it received and begin to develop guidelines based on this testimony. Several sources have predicted that guidance will not be available until at least late next year. 

In the next few days, Edelman will assess the extensive testimony we heard this week as well as the social and traditional media coverage surrounding it. We will provide an in-depth report next week that both summarizes and provides perspective on key topics. We hope you will continue to follow our Digital Health team on Twitter (@<a href="http://www.twitter.com/EmilyDownward">EmilyDownward</a>, @<a href="http://www.twitter.com/EngageInHealth">EngageInHealth</a>, and @<a href="http://www.twitter.com/EngageInHealth">RickMurray</a>) and visit our blog at www.engageinhealth.com. ]]></description>
         <link>http://www.engageinhealth.com/2009/11/an_edelman_report_day_2_of_the.html</link>
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         <pubDate>Fri, 13 Nov 2009 18:26:44 -0500</pubDate>
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         <title>Engaging in Health – on a Wave</title>
         <description><![CDATA[<b>This guest post is from Dave Levy (@<a href="http://twitter.com/levydr">levydr</a>) from Edelman’s Digital Public Affairs team in Washington, D.C.</b>

<em><strong>Disclosure</strong>: Wave was created by Google, a competitor of Edelman's client Microsoft</em>

The first day of the FDA Hearing on Social Media is now over, and we have one more full day of testimony to go. With the many conversations about the safest ways to communicate health, it comes as no surprise that we have spent a good amount of time trying to figure out the best way to read, follow, and analyze two full days of testimony. On the first day, our team came to meet as a group in the new collaboration platform from Google, <a href="https://chiowa.edelman.com/owa/redir.aspx?C=91235b41141b4c5da8776931ddc80228&URL=http%3a%2f%2fwave.google.com%2fhelp%2fwave%2fabout.html">Wave</a>. <strong>And we want you – and the world at large that is on Google Wave – <a href="https://wave.google.com/wave/#restored:wave:googlewave.com!w%252Bxcm0yyxiA.1">to join us in our now public wave, available here, for Day 2</a>. </strong>

<img alt="googlewave%20logo.png" src="http://www.engageinhealth.com/googlewave%20logo.png" width="188" height="63" / align="left" hspace="10"> We hope to organize the overwhelming conversation in a way that is open and collaborative; Wave has allowed us to do that. Each speaker's time has been slotted into a segment, and it's the perfect way to both track and organize the day. <a href="http://mashable.com/2009/11/08/google-wave-better-than-twitter-conference/">In the past it’s been tested a little for other conferences</a>, but we are hoping to ride the wave beyond simple conversations.
 
To us, this is the perfect opportunity to leverage application for a direct purpose: challenging us to use an open environment to talk about the application of health and social media. Wave allows us to share ideas about the fast moving hearing on the spot, with a large group of contributors. Even more importantly, we have the room to develop each idea with space for documents, visuals and commentary. (For more about why this is more than just dynamic, but also major shift in communication, <a href="http://www.edelmandigital.com/blog/2009/11/wave_explanation_v_anthropolog.html">check out my post on <strong>Authenticities</strong>, Edelman Digital’s blog</a>.)
 
As we go into the hearing this week, nothing seems more appropriate than talking about the role of openness in social media and in health. Google Wave is a flat, transparent platform for collaboration – and as social media pushes us toward more communication about personal health, how do the many parties involved in health have to adapt to understand that conversation? As <a href="http://www.engageinhealth.com/2009/11/first_do_no_harm_fair_balance.html">Nancy Turett challenged us earlier this week</a>: “We need to create more great examples – of digital conversation that educates with flair but no spin, informs in real time, and empowers people to take more responsibility for their personal health reform.”
 
<a href="https://wave.google.com/wave/#restored:wave:googlewave.com!w%252Bxcm0yyxiA.1">Join us in Google Wave</a>, and help us create the next great example.]]></description>
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         <pubDate>Fri, 13 Nov 2009 07:45:05 -0500</pubDate>
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         <title>An Edelman Report: Day 1 of the FDA Social Media Hearing</title>
         <description><![CDATA[In a move many are calling long-overdue, the <a href="http://www.fda.gov/AboutFDA/CentersOffices/CDER/ucm184250.htm">FDA’s social media hearing</a> (formally: Public Hearing on Promotion of Food and Drug Administration-Regulated Medical Products Using the Internet and Social Media Tools) commenced today. The purpose of this two-day session is for interested parties to comment on Internet and social media promotion of prescription drugs and vaccines. Currently, there is little industry guidance around this topic.

As the FDA’s Tom Abrams noted in his opening remarks, “it would be an understatement to say there is much interest in this area.” More than 800 people tried to register for the hearing, with only about 300 granted seats on a first-come, first-serve basis. In all, the hearing will accomodate about <a href="http://www.fda.gov/downloads/AboutFDA/CentersOffices/CDER/UCM189779.pdf">80 testimonies</a>, primarily from marketing and communications agencies, research companies, health and medical Web sites, major search players, pharmaceutical companies, and consumer groups. Prior to the meetings, the FDA <a href="http://edocket.access.gpo.gov/2009/pdf/E9-22618.pdf">posed five areas of discussion</a> that represent existing challenges—manufacturer accountability, real-time information, corrective information, use of links, and adverse event reporting. Today’s testimonies were devoted to the first four topics.

As expected, nearly every presenter noted that the general public indisputably turns to the Internet for health information, and that the Web is a very different landscape than other media. Many quoted recent Pew research stating that 61% of Americans and 83% of Internet users search online for health information. While the significant need for FDA guidance was made clear, fewer speakers offered tangible solutions. In addition, FDA panel members had the opportunity to ask questions, though participation was relatively limited. Following is a top-line overview of common themes from today’s testimony and some of the recommendations put forth.

<strong>General Themes and Consensus</strong> (<a href="http://www.engageinhealth.com/EDELMAN%20SUMMARY%20-%20Day%201%20FDASM.pdf">See PDF</a> for detailed report, just the topics listed here for brevity)
<ul><li> Need for Industry Voice
<li> Support for One-Click Rule
<li> Importance of Links
<li> Content Responsibility Debate
<li> Specific Recommendations to the FDA
<li> Universal Safety Symbol
<li> Standardized Formats
<li> Key Partnerships
<li> Social Media Committees </ul>
<strong>Looking Ahead to Day Two</strong>

Tomorrow’s hearing, which will begin at 8 a.m., will focus primarily on the challenges of adverse event reporting online under current regulations, as well as additional testimony on the topics discussed today. Notable speakers include Francer, Mack, Health Central’s Christopher Schroeder, Sermo’s Daniel Palestrant, John Bell and Melissa Davies of Word of Mouth Marketing Association, and Pfizer’s Freda Lewis-Hall and Clifford Thumma. We will provide another summary at the end of tomorrow’s hearing, as well as a comprehensive report early next week.

For updates during the second day of the hearing, we encourage you to follow the conversation live on Twitter through Edelman’s Digital Health team (@<a href="http://www.twitter.com/EmilyDownward">EmilyDownward</a>, @<a href="http://www.twitter.com/EngageInHealth">EngageInHealth</a>, and @<a href="http://www.twitter.com/RickMurray">RickMurray</a>). You can also visit us online and share your thoughts here on the blog.

 

 

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         <link>http://www.engageinhealth.com/2009/11/an_edelman_report_day_1_of_the_1.html</link>
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         <pubDate>Thu, 12 Nov 2009 17:56:16 -0500</pubDate>
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         <title>Are We Listening?</title>
         <description><![CDATA[<em>Heather Harper, who works with companies bringing innovations and resources to the e-patient community, gives some perspective from the patient community and highlights the benefits already being seen from widespread access to health information and engagement.</em>


There’s no denying it, the e-patient revolution has begun.  And that movement sets an important context for today and tomorrow’s FDA hearings on social media usage by medical products manufacturers.  As we digest the discussion and many interested people offer additional comments to the FDA, we must make sure we are informed by the robust patient-driven conversation that is already raging online.  

Patients – and many medical professionals – are not waiting for a perfect world of fair and balanced information.  They are wading into the messy swamp of information, resources, support groups and medical professionals’ opinions available online and using it to help inform treatment options as well as to verify information from their doctors.  Our recent Health Engagement Barometer showed that a new second opinion has emerged: 88 percent of respondents say they usually turn to their physician to validate information they get online and 88 percent also said they usually turn to other sources to validate information they get from their doctor.

What’s really most exciting to see as the e-patient community has grown and matured in its use of social networks is the emerging evidence showing that this use of information from online sources – even in its current imperfect state – is truly helping improve peoples’ health.  If product manufacturers are unable to fully engage in online discussions and serve as an information resource because of fear of regulatory actions stemming from unclear guidelines, then enormous amounts of information are missing.  That’s information that could potentially be helping more and more patients. 

<a href="http://e-patients.net/archives/2009/11/tell-the-fda-the-whole-story-please.html#more-3633">Susannah Fox’s e-patient.net blog post</a> about the impact of online medical information sets an important context.  If one of the guiding principles for the medical community is to “first do no harm,” we should consider the data Susannah shared in her post:

“In a 2008 survey we conducted in partnership with the <a href="http://www.chcf.org/">California HealthCare Foundation</a>, just 3% of e-patients said they or someone they know has been harmed by following medical advice or health information found on the internet, a number that has remained stable since 2006. Meantime, 60% of e-patients (or 42% of all adults) said they or someone they know has been helped by following medical advice or health information found on the internet. That’s an increase from 2006 when 31% of e-patients (25% of all adults) said that.”

It is imperative that we, as health communicators, give ample weight to the patient perspective as new guidelines for medical product manufacturers are being evaluated.  Although the proportion of patient perspectives is low among FDA hearing presenters, patients and their advocates are making their voices heard through forums such as <a href="http://www.twitter.com/">Twitter</a>, <a href="http://www.fdasm.com/">fdasm.com</a>, <a href="http://e-patients.net/">e-patients.net </a>blog and other networks.  As is the trend with many of today’s conferences, often the most insightful discussions come from the real-time conversations going on behind the scenes in these online forums, which can give a sense of what is resonating, what additional questions are emerging, and what is being misunderstood.

This real world of how patients are already using online resources must be something all of us involved in medical communications – from manufacturers to regulators to advisers – consider closely as this important discussion at the FDA continues.
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         <link>http://www.engageinhealth.com/2009/11/are_we_listening.html</link>
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                  <category domain="http://www.sixapart.com/ns/types#tag">e-patient</category>
                  <category domain="http://www.sixapart.com/ns/types#tag">FDA health hearings</category>
        
         <pubDate>Thu, 12 Nov 2009 14:17:15 -0500</pubDate>
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         <title>FDA Public Hearings Underway</title>
         <description><![CDATA[The two-day FDA public hearing on regulated medical products using the internet and social media began this morning. While the hearing is mostly an opportunity for companies and interested parties to present their ideas and opinions to the FDA, the FDA panel is asking questions of some of the speakers, and from their questions it seems they are most interested in those speakers who are presenting ideas for recommendations rather than just rehashing the importance of the Internet for patients and for communicating public health information.

The coverage can be watched via webcast at <a href="http://www.capitolconnection.net/capcon/fda/111209/FDAlive.htm">http://www.capitolconnection.net/capcon/fda/111209/FDAlive.htm</a>

The Twitterverse is exploding using the hashtag <a href="http://search.twitter.com/search?q=%23fdasm">#fdasm</a>. 

If you want to follow my commentary, I'm tweeting from <a href="http://www.twitter.com/emilydownward">@emilydownward</a>

More to come. ]]></description>
         <link>http://www.engageinhealth.com/2009/11/fda_public_hearings_underway.html</link>
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         <pubDate>Thu, 12 Nov 2009 10:12:40 -0500</pubDate>
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