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Using Social Media for Your Brand
            How to start
         How to keep going
     How to stay out of trouble
   How to be effective and relevant

  Developed by Michele Bennett
  Chief Operating Officer, Wool Labs, LCC
  In collaboration with QooQoo
About Me
• Discovery, Clinical and Regulatory Affairs professional, computer
  engineer, behavioral and data scientist
• 25 + years experience in Pharmaceuticals, Devices, and Biotech
  including Marketing, Competitive Intelligence and Market Research
• Co-founder and COO of Wool.labs which creates tools for social media
  monitoring and analysis (WebDig), engagement (DigBar), social
  search, predictive intelligence (Spark), and more.
• The company has been working with social media in Healthcare for 5
  years – longer than just about anyone else.
• We publish our own studies as well as work with clients across the
  healthcare continuum.
Lions, Tigers and Bears, Oh My
• How did the Internet become so scary?
• We all use it every day. We panic when the power is off (and the
  Internet goes down). A day without the Internet eats away at most of
  us; we feel unproductive and out of touch. We capitalize Internet.
• So the saying, “with great power come great responsibility” should
  apply to the Internet. But it does not.
• The Internet holds great power – powerful content, the power to
  influence, the power to make people move, the power to effect change
• The Internet has no accountability – you can put anything
  there, regardless of truth, validity or rationality. (Psst...It lies).
• The Internet knows everything, knows nothing, contains billions of
  important pieces of information and even more junk.
• So, it is Chaos and Wonder. Power and Lies. Data, data and more data.
• And we can’t get enough. But we hesitate to use it well.
For Us, What is Social Media?
• Tens of millions of people using the Internet for medical advice, to
  check their physicians’ diagnoses, to share their health experiences, to
  provide advice to others, to self-treat, to break all of the rules told to
  them by their doctors, to define their healthcare
• It’s a medium that you cannot control. Influence maybe but not control.
• It’s truly interactive – two-way, ten-way, ten thousand–way
  communication.
• It’s everywhere – computer, tablet, phone, TV. No other medium in
  recent history has captivated people so.
• It moves lightening fast and cannot be prematurely halted.
• It generates millions of connections, data
  points, conversations, opinions, beliefs – simultaneously and in as many
  directions.
• And if harnessed just right, the most powerful marketing vehicle we
  have ever had at our disposal.
Why Take on The Challenge?
• Tens of millions of people talking about your brands and you’re not in
  the room.
    – If that was happening in a real room, you would not just stand by and watch. (Unless
      everyone all had spears and then I might just kind of just slip away, but that seems
      unlikely.)
• Everyone who impacts your products is there –
  patients, caregivers, physicians, nurses, managed care
  professionals, pharmacists
• And then there are some interesting stats:
    – Less people are going to their physicians - Insured Americans are using fewer
      medical services, raising questions about whether patients are consuming less
      health care as they pick up a greater share of the costs. – Wellpoint 2012
    – Compliance is a problem that is costing America’s healthcare system a lot of money
      - One-third to one-half of all patients do not take medication as prescribed, and up
      to one-quarter never fill prescriptions at all. Such lapses fuel more than $100 billion
      dollars in health costs annually because those patients often get sicker. –
      PharmaMarketer 2012
Why Take on The Challenge?
• More stats: Harris Interactive 2011
    – Physicians are wired, online and using social media
    – 94% of physicians are using smart phones to communicate, manage personal and
      business workflows, and access medical information.
    – Nearly 90 percent of physicians use a social-media website for personal use, and 67
      percent use it professionally, according to a survey of 4,000 physicians by Quantia
      MD
    – The number of people looking for health information on the Internet is increasing
      every year
    – While the percentage of adults who go online (79%) has not changed significantly for
      several years, the proportion of those who are online and have ever used the
      Internet to look for health information has increased to 88% this year, the highest
      number ever.
    – Fully 81% of all eHealth consumers have looked for health information online in the
      last month. On average, eHealth consumers do this about 6 times a month.
    – Very few eHealth consumers are dissatisfied with their ability to find what they
      want online. Only 9% report that they were somewhat (6%) or very (3%)
      unsuccessful. And only 8% believe that the information they found was unreliable.
Why Take on The Challenge?
• What do patients look for: Pew Internet Project 2011
    – 66% online for information about a specific disease or medical problem (perennially
      in the top spot).
    – 56% for information about a certain medical treatment or procedure.
    – 44% for information about doctors or other health professionals.
    – 36% for information about hospitals or other medical facilities.
    – 34% regularly use blogs and forums for health information (60 million people)
    – 33% for information related to health insurance, including private
      insurance, Medicare or Medicaid.
    – 29% for information about food safety or recalls.
    – 24% for information about drug safety or recalls
    – 22% information about environmental health hazards.


• Access, Reach, Engagement, Frequency – the hallmark of all marketing
  converges on the Internet and in social media. There is no venue
  bigger, faster or more cost effective to use. So we have to figure out
  how.
Why Take on The Challenge?
                                     0%   10%   20%   30%   40%   50%   60%     70%      80%      90%        100%

          Highly knowledgeable
                 Communication
         Shared decision-making
                         Honesty
                        Listening
                         Respect
                         Integrity
      Open to differing opinions
   Having enough time together
         Interested in prevention
Open to more holistic approaches
                      Supportive
                 A good teacher
                Feeling cared for                                             Patient Values
                       Patience                                         Most Important Characateristics of
                                                                          Those Providing Healthcare
                    Promptness
                                                                                    n = 101
                      Sensitivity
                         Flexible
           Other, please specify
We have Rules
• But our world has rules even when our audience has none
• We have to play but a set of guidelines that govern what we say, when
  we say it and who we say it to.
• Our audience says whatever it wants even if it is incorrect, tells others
  what to do even if it’s off label, and can have great influence over many
• So in a world where we have to play by rather strict rules with an
  audience who has no rules, how do we master social media and
  Internet-based dialog and
   – Take advantage of having so many ears and eyes for our messages
   – Understand and address the concerns of internal departments
   – Not get in trouble with external regulators


• That’s what we are going to talk about, try it on for size and
  feel, and look toward a path forward
Rules of the Game
• Just like any other tool in regulated industries, social needs internal
  procedures and policies for use.
• As we can see from where the FDA started in guidelines, no general
  social guidelines are going to be forth coming soon
• So organizations will have to create their own way using the guidelines
  that we have already.
   – No SM guideline will ever allow companies to not include fair
      balance because the medium doesn’t easily provide the space.
• So using common sense and existing FDA rules for
  communications, companies can move forward.
• Every organization has its own threshold for risk and their own way of
  interpreting the FDA guidelines
• But we can provide some foundation for how to get started
Rules of the Game
• In a regulated industry, no medium should be used without policies
• What do policies have to cover? You need three:
   1. Listen & Learn
   2. Internalize & React
   3. Respond & Engage
• In general, social media policies need to be
   – Brief and direct
   – Clear about roles and responsibilities
   – Address guidelines, risks and benefits
   – Applied internally and well as externally (e.g., include a policy on
      employee and employer actions)
   – Real, realistic, and implementable
What Game?
• Where to start?
• Engagement? Ok, but its usually the hardest place to start and typically
  poses the most risk. We never recommend starting here, ever.
• Listening and learning is by far the best place to begin
• Why? Maximum benefit, minimum risk
• Easiest (yes, we know that is a relative term) guidelines to develop, get
  approved, use, track, and benefit from and low risk of saying something
  by which a letter, warning, internal reprimand or more damages you or
  your company
• But effective Listening programs need to also be accompanied with
  methods of internalizing and reacting to findings
• If not, brands risk running into internal confusion and even unnecessary
  panic and perhaps even external problems.
1. Listening & Learning
• Listening and learning provides fuel and data for any marketing, sales
  and communications effort
    – Listening programs can be highly measureable, cost efficient and targeted methods
      for collecting data on any audience type.
    – Ensure that your listening parameters are aligned with brand strategies and always
      set metrics for success
• Encourage listening despite perceived risks
    – Social media monitoring should be encouraged, and policies should address the
      method of monitoring, and what is done with the results.
    – A manufacturer can learn first of additional indications and real-world risks that did
      not surface in trials. It is inevitable, positive, and responsible
• Its not a one time thing
    – Many marketers equate social media monitoring with conducting a one-time market
      research project. The results are analyzed, used to guide decisions and
      messaging, then the study is placed in a binder next to the one from last year’s sales
      meeting.
    – However social media is fluid, and challenges and opportunities are perpetual.
    – Think of it as a constant source of the latest information you need to know
1. Listening & Learning
• There are tools to monitor the social media in a manner consistent with
  existing guidelines
    – Any tool you use must pass certain tests around the collection and store of PII and
      how any potential non-reportable AE’s are collected and reported to you
• Listening programs can be proactive management tools
    – Today’s tweet can be tomorrow’s Today’s Show story. (We’ve seen it happen).
    – Social media is an opportunity for a proactive firm to address problems before they
      start.
• Guidelines for listening should include:
    – Treatment of PII, adverse experiences, unexpected learnings, off label requests and
      suspected usage
    – Departments involved in listening, tools used and for what purpose, metrics involved
      including thresholds for signals
• But don’t focus on the scary and negative aspects.
    – Internet dialog contains so much valuable and useful data – competitive
      intelligence, market research, drivers and barriers to sales, patient adherence
      answers, physician motivators – its all there and your competitors know it too
2. Internalize & React
• Legal & Medical oversight
    – Monitoring research should be done with oversight to ensure the methodology
      is appropriate, reporting obligations are held, and with legal and regulatory
      guidance on how to proceed with discoveries that might have labeling
      implications.
• Fear of Adverse-Events is not warranted and not an excuse
    – In the almost 5 years we have been monitoring SM, we have yet to come across a
      FDA-defined reportable AE.
    – People do report problems though where manufacturers can identify and document
      instances of recurring adverse events or off-label use
    – If a blog, video or chat comment does contain sufficient information for reporting, it
      should be routed urgently to the team responsible for reporting AEs.
    – This solution is common sense, but “fear of AEs” is one of the largest hurdles facing
      manufacturers that wish to engage more deeply with customers.
    – You cannot proceed to engagement until you address this concern completely and
      this is the stage at which it should be addressed.
2. Internalize & React
• “Not Looking at Internet” is Not a Sound Legal Defense.
    – Lawyers are legitimately concerned that evidence of monitoring could create an
      FDA expectation that the manufacturer is obliged to read and respond to all of
      social media.
    – That is obviously impractical and an the FDA will not soon demand manufacturers
      to read the entire Internet.
    – However if a product issue is identified, trending, and ignored, a poor defense
      would be “we didn’t know it was happening because we didn’t use the Internet.”
    – It is not unreasonable to expect the FDA to take action on a company that did not
      update labeling based on newly evident side effects that are well documented
      online. It is also reasonable to assume that manufacturers would be expected to
      take reasonable efforts to clarify labeling in prominent forums where patients or
      doctors are promoting off-label use. The current guideline is one step away.
• Don’t “Freeze” Corporate Efforts or Look the Other Way
    – It’s important that social media monitoring be shared beyond the group doing the
      monitoring, so medical affairs or legal can determine if the insights warrant FDA
      communication. So in effect, by “freezing” or “avoiding” social media
      monitoring, manufacturers may be taking a greater risk than reasonable efforts to
      monitor and respond.
2. Internalize & React
• Guidelines at this stage need to include
    – Methods for internally reporting issues or concerns raised by dialog including what
      to do with labeling concerns, marketing and sales issues, potential legal issues, PR
      and communication needs, external affairs and more
    – Each department playing a role with listening results needs their own policies
      including escalation thresholds
3. Engage & Respond
• Policies for engagement should come after policies for listening and
  internalizing
• Monitor First
    – A best-practice related to social media is to monitor mediums for a period (3 to 6
      months) before engaging
    – This gives an organization time to understand the context, and the appropriate
      approach for engaging.
• Use existing credible communities
    – Manufacturers publishing or hosting social media can be faced with serious
      risks, regulatory constraints and cannot do so with objectivity.
    – As a result, marketers should look to reach their audience via appropriate social
      media sites and tools using paid and earned media.
    – Credibility in social media is earned – extremely so. In the current
      environment, manufacturers are not completely trusted and biases can be overcome
      but by learning and only engaging when you know enough to be perceived as
      helpful, which varies by category
3. Engage & Respond
• Know Who Matters (sometimes, it’s a collective Who)
• Social-media engagement requires
    – Addressing not just the concepts of “headline risk” – what journalists and the media
      have to say but
    – Addressing the concerns of communities or individuals with the speed and attention
      otherwise reserved to investment or media inquiries.
• Set Guidelines to Avoid Mistakes or Apathy
    – Marketing should have clear policies on advertising around social media, and this is
      similar to advertising in print or television.
    – If the ads are placed adjacent to condition-specific information, they should be
      unbranded and not branded unless fair balance on the page can be included.
    – Just as manufacturers gain comfort with digital advertising, you will gain comfort
      with running ads wherever their target customers are, and not fear ad placement
      surrounding uncontrollable social media.
    – The ad may be the only appropriate way to reach some patients, and most
      consumers know that the difference between ads and other content.
    – Actually answering posts in a social forum requires a tool for delivery and
      tracking of the post as well as for the simultaneous delivery of fair balance
3. Engage & Respond
• Revise, Review, Processes, & Develop a Crisis Plan:
•   For good reasons, manufacturers maintain thorough and somewhat lengthy review
    processes.
•   However public relations professionals are often granted “fast track” reviews for time-
    sensitive matters like product issues or launches.
•   Similarly, the process by which ads are approved cannot facilitate handling of a timely
    event in social media. Some matters need rapid attention and resolution.
•   It is highly possible that at some time in the future, a product recall could involve a
    manufacturer directly communicating with customers, rather than shaped by the
    media, to probably a much better outcome
•   Other industries have social media commentary ready for any major disaster
•   All companies should have a “crisis-management guide” that includes mediums for mass
    communication that are not dependent on print and television reporters.
Armed and Dangerous. Now What?
1.   Create your first pass of a listening policy that addresses how data is
     collected, who gets what type of information (data, analysis, etc), and
     what constitutes a signal or alert of significance, how any issues will
     be reported to you, and who gets what if thresholds are met.
     •   The FDA looks to see if you have a policy and if you are following it. It is a higher risk
         to have a policy that you don’t or can’t follow than not having one at all.
2.   Define a listening program or pilot that runs 3 – 6 months
3.   Test the program against the policies and adjust accordingly
4.   While the listening program in running, start on your internalization
     and reaction policies. Include marketing, medical, legal, and
     communications. Keep them short and direct.
5.   Compare your internalization guidelines to the results of the listening
     analysis to check for the need for adjustments.
6.   Once your Listening and Internalization programs seem to work, then
     start on Engagement Guidelines and options.
Armed and Dangerous. Now What?
7.  Engagement can come in multiple forms. Yes, online but also
    offline, in office, via your branded website, in the community, in
    hospital. Think about the broader concept of word-of-mouth to find
    ways to engage that you already use. The goal is to build trust and
    credibility.
8. If you are ready to engage online, use tools to ensure that only
    approved responses are used and tracked for
    marketing, medical, regulatory and legal review and compliance. Think
    about programs in which you seed the online communities without
    you directly engaging – KOLs , mentor programs, community
    leaders, self-managment tools
9. Be prepared to handle bad news. Know what bad news is and
    appropriate reactions internally as well as escalation. The more
    prepared the organization is, the less likely it is caught off guard.
10. Listening, internalization and engagement all work together and are
    progressive. If you start in the middle, you increase risks with one risk
    being the organization will not want to try social again for a long time.
Ways Others Use Social Media
                    Product Launch
                   Market Research
                    Market Strategy
                 Scientific Publication
        Patient Understanding and Engagement
                     Sales Strategy
                  Physician Influence
          Hospital Relationship Development
Example Scenarios

               Avandia
When bad things happened to good drugs
Situation Set Up
• In 2003 and 2004, the benefits for most patients outweighed risks and
  for the most part patients were more hopeful; most of patients’
  struggles were more connected with diabetes than with the brand.
• In 2005, patients begin to become aware of risks as well as weight gain
  and edema. They openly discuss it but feel physicians are largely
  downplaying their concerns. Some patients begin to become more
  vocal and reach out to be heard. Negative sentiment rises
  exponentially.
• In 2006, patients start to connect their concerns to congestive heart
  failure. This year showed early warning signs of problems for the brand.
  Loss of trust is the next predictable problem.
• 2007 was a pivotal year - where patient trust starts to drop
  dramatically. Patients question their physicians and begin to take
  control over their medication choices. Patients start referencing
  GSK, which in our experience is rarely good. Vioxx comparisons are
  raised and legal action is easily predicted to be the next course of
  action.
Situation Set Up
• By 2008, patients display open hostility to the Avandia, GSK, and even
  their physicians. Legal discussions exploded and overtake diabetes-
  related conversations in volume. Trust is gone from conversations.
• In 2009, patients become more resigned and loss of trust starts to
  translate to the industry. Patients have stopped listening and new
  information that could have been used to sway opinions is dismissed.
  Conversations move from patients to industry analysts, marketers, and
  consumers who are not patients.
• By mid 2010, patients are resolute in their decisions. They are no less
  angry at Avandia and GSK but are now also angry at the FDA as they see
  the FDA as not listening either.
• At no time during the controversy over the last several years has
  anyone reached out to the patient base to explain or reassure. Patients
  tried to decipher complex studies and analyses – and, right or
  wrong, once they drew their conclusions, they were not going to be
  swayed otherwise.
Situation Set Up
Situation Set Up

                   Language Intensity Level - Avandia
                  Measure of the Level of Negativity in Patient Reports
                        Low = 0--1 Moderate - 2-3High = 4 - 5
                                       n = 2,111
                                          5              5
5


                                                                          4    4
4


                           3
3


            2
2


     1
1



0
    2004   2005          2006           2007           2008          2009     2010
Opportunities for Discussion
• If this happened in 2012 with the technology available now, what
  would you do and when?
• Who should have been involved in listening, internalizing and possibly
  engaging?
• Listening would have revealed interesting results. How would you like
  to see your company internalize this type of information?
• Should the brand have engaged with patients, physicians, media. And
  how? Remember engagement doesn’t have to be in kind.
• In hindsight, so much is obvious. But there are always higher risk
  products on the market; maybe those with high benefit but limited
  populations. Does that change how a brand proceeds?
• What are the risks and benefits in learning information that may not be
  initially well received in the organization?
Example Scenarios

             Jakafi
Real data powering product launch
Situation Set Up

                               Myelofibrosis Sentiment Index
                           Ratio of Positive Conversations to Negative Conversations
                           Range of Index: -100 (all neg) to 100 (all pos). 0 is neutral
  2.0
                                                                            0.4
                                          0.0                                                     0.0
  0.0
                                                                                           -0.3
 -2.0                                                -0.9
                                                                -1.8
 -4.0

 -6.0
                                                                          N = 1054
                                                                          Confidence Interval = 95%
 -8.0
                                                                          Margin of Error= 2.96%
                              -8.4
-10.0
                    -9.6

-12.0
          -12.5
-14.0
        2000-2003   2004     2005        2006       2007        2008       2009        2010       2011
Situation Set Up

                            Awareness & Support Index
                  Percent of Treatment Conversations where Patients/Caregivers
14%               Discuss Dissatisfaction with Watch & Wait as Treatment Option    13%
                   n = 1054 Confidence Level = 95% Margin of Error = 2.96%
12%
                                                                            10%
10%

8%

6%                           5%                           5%
                                       4%                          4%
4%
                   2%                           2%
2%       1%

0%
      2000-2003    2004     2005      2006     2007      2008     2009      2010   2011
Situation Set Up
                                       Awareness & Support Index
90%                                  Community Members' Disease Knowledge
      78%                     Percent of Conversations by Knowledge-Level Over Time
80%
                             n = 1054 Confidencel Level = 95% Margin of Error = 2.96%
70%
                  64%

60%                           58%
                                         51%          50%           52%
50%                                                                                          48%
                                            44%                                46%                    45%
                                                    43%
                                40%
40%                                                            35%
                   32%
                                                                             30%                     29%
30%                                                                                      27%               26%
                                                                                   24%         25%
        22%
20%
                                                                     13%
10%                                                       7%
                        4%          2%         4%

0%
      2000-2003    2004         2005        2006      2007       2008          2009          2010     2011


                    Zero to Low Knowledge      Moderate Knowledge         Strong Knowledge
Situation Set Up
                            Awareness & Support Index
                   Percent of Conversations on Cancer-Oriented Sites Over Time
70%                 n = 1054 Confidencel Level = 95% Margin of Error = 2.96%
                                                                                 64%
                                                                          61%
60%
                                                                                        53%

50%


40%


30%
                             25%

20%                                                            17%
        13%
                                                    11%
10%
                  3%
                                         1%
0%
      2000-2003   2004       2005       2006       2007        2008       2009   2010   2011
Situation Set Up

   Pain Points
       n = 1054                                 No Cure
Confidence Level = 95%                            9%
                                   More
Margin of Error = 2.96%                                  More
                                Information
                                                       Treatment
                                    25%
                                                        Options
                                                          16%

                                 More                 Watch & Wait
                              Professional                9%
                              Knowledge
                                  14%
                                              Caregver/Patient
                                                  Support
                             More                   20%
                          Professional
                          Interaction
                              7%
Opportunities for Discussion
• Jakafi is the first treatment option for patients with myelofibrosis that
  actually treatment the disease rather than just addressing symptoms
• Based on what we have shared today, are there recommendations you
  would make for the brand team?
• Should they continue monitoring and why?
• Should they engage and how?
• Are there things you can think of that stand out as interesting and
  actionable?

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Qoo qoo using Social Media for Market Research

  • 1. Using Social Media for Your Brand How to start How to keep going How to stay out of trouble How to be effective and relevant Developed by Michele Bennett Chief Operating Officer, Wool Labs, LCC In collaboration with QooQoo
  • 2. About Me • Discovery, Clinical and Regulatory Affairs professional, computer engineer, behavioral and data scientist • 25 + years experience in Pharmaceuticals, Devices, and Biotech including Marketing, Competitive Intelligence and Market Research • Co-founder and COO of Wool.labs which creates tools for social media monitoring and analysis (WebDig), engagement (DigBar), social search, predictive intelligence (Spark), and more. • The company has been working with social media in Healthcare for 5 years – longer than just about anyone else. • We publish our own studies as well as work with clients across the healthcare continuum.
  • 3. Lions, Tigers and Bears, Oh My • How did the Internet become so scary? • We all use it every day. We panic when the power is off (and the Internet goes down). A day without the Internet eats away at most of us; we feel unproductive and out of touch. We capitalize Internet. • So the saying, “with great power come great responsibility” should apply to the Internet. But it does not. • The Internet holds great power – powerful content, the power to influence, the power to make people move, the power to effect change • The Internet has no accountability – you can put anything there, regardless of truth, validity or rationality. (Psst...It lies). • The Internet knows everything, knows nothing, contains billions of important pieces of information and even more junk. • So, it is Chaos and Wonder. Power and Lies. Data, data and more data. • And we can’t get enough. But we hesitate to use it well.
  • 4. For Us, What is Social Media? • Tens of millions of people using the Internet for medical advice, to check their physicians’ diagnoses, to share their health experiences, to provide advice to others, to self-treat, to break all of the rules told to them by their doctors, to define their healthcare • It’s a medium that you cannot control. Influence maybe but not control. • It’s truly interactive – two-way, ten-way, ten thousand–way communication. • It’s everywhere – computer, tablet, phone, TV. No other medium in recent history has captivated people so. • It moves lightening fast and cannot be prematurely halted. • It generates millions of connections, data points, conversations, opinions, beliefs – simultaneously and in as many directions. • And if harnessed just right, the most powerful marketing vehicle we have ever had at our disposal.
  • 5. Why Take on The Challenge? • Tens of millions of people talking about your brands and you’re not in the room. – If that was happening in a real room, you would not just stand by and watch. (Unless everyone all had spears and then I might just kind of just slip away, but that seems unlikely.) • Everyone who impacts your products is there – patients, caregivers, physicians, nurses, managed care professionals, pharmacists • And then there are some interesting stats: – Less people are going to their physicians - Insured Americans are using fewer medical services, raising questions about whether patients are consuming less health care as they pick up a greater share of the costs. – Wellpoint 2012 – Compliance is a problem that is costing America’s healthcare system a lot of money - One-third to one-half of all patients do not take medication as prescribed, and up to one-quarter never fill prescriptions at all. Such lapses fuel more than $100 billion dollars in health costs annually because those patients often get sicker. – PharmaMarketer 2012
  • 6. Why Take on The Challenge? • More stats: Harris Interactive 2011 – Physicians are wired, online and using social media – 94% of physicians are using smart phones to communicate, manage personal and business workflows, and access medical information. – Nearly 90 percent of physicians use a social-media website for personal use, and 67 percent use it professionally, according to a survey of 4,000 physicians by Quantia MD – The number of people looking for health information on the Internet is increasing every year – While the percentage of adults who go online (79%) has not changed significantly for several years, the proportion of those who are online and have ever used the Internet to look for health information has increased to 88% this year, the highest number ever. – Fully 81% of all eHealth consumers have looked for health information online in the last month. On average, eHealth consumers do this about 6 times a month. – Very few eHealth consumers are dissatisfied with their ability to find what they want online. Only 9% report that they were somewhat (6%) or very (3%) unsuccessful. And only 8% believe that the information they found was unreliable.
  • 7. Why Take on The Challenge? • What do patients look for: Pew Internet Project 2011 – 66% online for information about a specific disease or medical problem (perennially in the top spot). – 56% for information about a certain medical treatment or procedure. – 44% for information about doctors or other health professionals. – 36% for information about hospitals or other medical facilities. – 34% regularly use blogs and forums for health information (60 million people) – 33% for information related to health insurance, including private insurance, Medicare or Medicaid. – 29% for information about food safety or recalls. – 24% for information about drug safety or recalls – 22% information about environmental health hazards. • Access, Reach, Engagement, Frequency – the hallmark of all marketing converges on the Internet and in social media. There is no venue bigger, faster or more cost effective to use. So we have to figure out how.
  • 8. Why Take on The Challenge? 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Highly knowledgeable Communication Shared decision-making Honesty Listening Respect Integrity Open to differing opinions Having enough time together Interested in prevention Open to more holistic approaches Supportive A good teacher Feeling cared for Patient Values Patience Most Important Characateristics of Those Providing Healthcare Promptness n = 101 Sensitivity Flexible Other, please specify
  • 9. We have Rules • But our world has rules even when our audience has none • We have to play but a set of guidelines that govern what we say, when we say it and who we say it to. • Our audience says whatever it wants even if it is incorrect, tells others what to do even if it’s off label, and can have great influence over many • So in a world where we have to play by rather strict rules with an audience who has no rules, how do we master social media and Internet-based dialog and – Take advantage of having so many ears and eyes for our messages – Understand and address the concerns of internal departments – Not get in trouble with external regulators • That’s what we are going to talk about, try it on for size and feel, and look toward a path forward
  • 10. Rules of the Game • Just like any other tool in regulated industries, social needs internal procedures and policies for use. • As we can see from where the FDA started in guidelines, no general social guidelines are going to be forth coming soon • So organizations will have to create their own way using the guidelines that we have already. – No SM guideline will ever allow companies to not include fair balance because the medium doesn’t easily provide the space. • So using common sense and existing FDA rules for communications, companies can move forward. • Every organization has its own threshold for risk and their own way of interpreting the FDA guidelines • But we can provide some foundation for how to get started
  • 11. Rules of the Game • In a regulated industry, no medium should be used without policies • What do policies have to cover? You need three: 1. Listen & Learn 2. Internalize & React 3. Respond & Engage • In general, social media policies need to be – Brief and direct – Clear about roles and responsibilities – Address guidelines, risks and benefits – Applied internally and well as externally (e.g., include a policy on employee and employer actions) – Real, realistic, and implementable
  • 12. What Game? • Where to start? • Engagement? Ok, but its usually the hardest place to start and typically poses the most risk. We never recommend starting here, ever. • Listening and learning is by far the best place to begin • Why? Maximum benefit, minimum risk • Easiest (yes, we know that is a relative term) guidelines to develop, get approved, use, track, and benefit from and low risk of saying something by which a letter, warning, internal reprimand or more damages you or your company • But effective Listening programs need to also be accompanied with methods of internalizing and reacting to findings • If not, brands risk running into internal confusion and even unnecessary panic and perhaps even external problems.
  • 13. 1. Listening & Learning • Listening and learning provides fuel and data for any marketing, sales and communications effort – Listening programs can be highly measureable, cost efficient and targeted methods for collecting data on any audience type. – Ensure that your listening parameters are aligned with brand strategies and always set metrics for success • Encourage listening despite perceived risks – Social media monitoring should be encouraged, and policies should address the method of monitoring, and what is done with the results. – A manufacturer can learn first of additional indications and real-world risks that did not surface in trials. It is inevitable, positive, and responsible • Its not a one time thing – Many marketers equate social media monitoring with conducting a one-time market research project. The results are analyzed, used to guide decisions and messaging, then the study is placed in a binder next to the one from last year’s sales meeting. – However social media is fluid, and challenges and opportunities are perpetual. – Think of it as a constant source of the latest information you need to know
  • 14. 1. Listening & Learning • There are tools to monitor the social media in a manner consistent with existing guidelines – Any tool you use must pass certain tests around the collection and store of PII and how any potential non-reportable AE’s are collected and reported to you • Listening programs can be proactive management tools – Today’s tweet can be tomorrow’s Today’s Show story. (We’ve seen it happen). – Social media is an opportunity for a proactive firm to address problems before they start. • Guidelines for listening should include: – Treatment of PII, adverse experiences, unexpected learnings, off label requests and suspected usage – Departments involved in listening, tools used and for what purpose, metrics involved including thresholds for signals • But don’t focus on the scary and negative aspects. – Internet dialog contains so much valuable and useful data – competitive intelligence, market research, drivers and barriers to sales, patient adherence answers, physician motivators – its all there and your competitors know it too
  • 15. 2. Internalize & React • Legal & Medical oversight – Monitoring research should be done with oversight to ensure the methodology is appropriate, reporting obligations are held, and with legal and regulatory guidance on how to proceed with discoveries that might have labeling implications. • Fear of Adverse-Events is not warranted and not an excuse – In the almost 5 years we have been monitoring SM, we have yet to come across a FDA-defined reportable AE. – People do report problems though where manufacturers can identify and document instances of recurring adverse events or off-label use – If a blog, video or chat comment does contain sufficient information for reporting, it should be routed urgently to the team responsible for reporting AEs. – This solution is common sense, but “fear of AEs” is one of the largest hurdles facing manufacturers that wish to engage more deeply with customers. – You cannot proceed to engagement until you address this concern completely and this is the stage at which it should be addressed.
  • 16. 2. Internalize & React • “Not Looking at Internet” is Not a Sound Legal Defense. – Lawyers are legitimately concerned that evidence of monitoring could create an FDA expectation that the manufacturer is obliged to read and respond to all of social media. – That is obviously impractical and an the FDA will not soon demand manufacturers to read the entire Internet. – However if a product issue is identified, trending, and ignored, a poor defense would be “we didn’t know it was happening because we didn’t use the Internet.” – It is not unreasonable to expect the FDA to take action on a company that did not update labeling based on newly evident side effects that are well documented online. It is also reasonable to assume that manufacturers would be expected to take reasonable efforts to clarify labeling in prominent forums where patients or doctors are promoting off-label use. The current guideline is one step away. • Don’t “Freeze” Corporate Efforts or Look the Other Way – It’s important that social media monitoring be shared beyond the group doing the monitoring, so medical affairs or legal can determine if the insights warrant FDA communication. So in effect, by “freezing” or “avoiding” social media monitoring, manufacturers may be taking a greater risk than reasonable efforts to monitor and respond.
  • 17. 2. Internalize & React • Guidelines at this stage need to include – Methods for internally reporting issues or concerns raised by dialog including what to do with labeling concerns, marketing and sales issues, potential legal issues, PR and communication needs, external affairs and more – Each department playing a role with listening results needs their own policies including escalation thresholds
  • 18. 3. Engage & Respond • Policies for engagement should come after policies for listening and internalizing • Monitor First – A best-practice related to social media is to monitor mediums for a period (3 to 6 months) before engaging – This gives an organization time to understand the context, and the appropriate approach for engaging. • Use existing credible communities – Manufacturers publishing or hosting social media can be faced with serious risks, regulatory constraints and cannot do so with objectivity. – As a result, marketers should look to reach their audience via appropriate social media sites and tools using paid and earned media. – Credibility in social media is earned – extremely so. In the current environment, manufacturers are not completely trusted and biases can be overcome but by learning and only engaging when you know enough to be perceived as helpful, which varies by category
  • 19. 3. Engage & Respond • Know Who Matters (sometimes, it’s a collective Who) • Social-media engagement requires – Addressing not just the concepts of “headline risk” – what journalists and the media have to say but – Addressing the concerns of communities or individuals with the speed and attention otherwise reserved to investment or media inquiries. • Set Guidelines to Avoid Mistakes or Apathy – Marketing should have clear policies on advertising around social media, and this is similar to advertising in print or television. – If the ads are placed adjacent to condition-specific information, they should be unbranded and not branded unless fair balance on the page can be included. – Just as manufacturers gain comfort with digital advertising, you will gain comfort with running ads wherever their target customers are, and not fear ad placement surrounding uncontrollable social media. – The ad may be the only appropriate way to reach some patients, and most consumers know that the difference between ads and other content. – Actually answering posts in a social forum requires a tool for delivery and tracking of the post as well as for the simultaneous delivery of fair balance
  • 20. 3. Engage & Respond • Revise, Review, Processes, & Develop a Crisis Plan: • For good reasons, manufacturers maintain thorough and somewhat lengthy review processes. • However public relations professionals are often granted “fast track” reviews for time- sensitive matters like product issues or launches. • Similarly, the process by which ads are approved cannot facilitate handling of a timely event in social media. Some matters need rapid attention and resolution. • It is highly possible that at some time in the future, a product recall could involve a manufacturer directly communicating with customers, rather than shaped by the media, to probably a much better outcome • Other industries have social media commentary ready for any major disaster • All companies should have a “crisis-management guide” that includes mediums for mass communication that are not dependent on print and television reporters.
  • 21. Armed and Dangerous. Now What? 1. Create your first pass of a listening policy that addresses how data is collected, who gets what type of information (data, analysis, etc), and what constitutes a signal or alert of significance, how any issues will be reported to you, and who gets what if thresholds are met. • The FDA looks to see if you have a policy and if you are following it. It is a higher risk to have a policy that you don’t or can’t follow than not having one at all. 2. Define a listening program or pilot that runs 3 – 6 months 3. Test the program against the policies and adjust accordingly 4. While the listening program in running, start on your internalization and reaction policies. Include marketing, medical, legal, and communications. Keep them short and direct. 5. Compare your internalization guidelines to the results of the listening analysis to check for the need for adjustments. 6. Once your Listening and Internalization programs seem to work, then start on Engagement Guidelines and options.
  • 22. Armed and Dangerous. Now What? 7. Engagement can come in multiple forms. Yes, online but also offline, in office, via your branded website, in the community, in hospital. Think about the broader concept of word-of-mouth to find ways to engage that you already use. The goal is to build trust and credibility. 8. If you are ready to engage online, use tools to ensure that only approved responses are used and tracked for marketing, medical, regulatory and legal review and compliance. Think about programs in which you seed the online communities without you directly engaging – KOLs , mentor programs, community leaders, self-managment tools 9. Be prepared to handle bad news. Know what bad news is and appropriate reactions internally as well as escalation. The more prepared the organization is, the less likely it is caught off guard. 10. Listening, internalization and engagement all work together and are progressive. If you start in the middle, you increase risks with one risk being the organization will not want to try social again for a long time.
  • 23. Ways Others Use Social Media Product Launch Market Research Market Strategy Scientific Publication Patient Understanding and Engagement Sales Strategy Physician Influence Hospital Relationship Development
  • 24. Example Scenarios Avandia When bad things happened to good drugs
  • 25. Situation Set Up • In 2003 and 2004, the benefits for most patients outweighed risks and for the most part patients were more hopeful; most of patients’ struggles were more connected with diabetes than with the brand. • In 2005, patients begin to become aware of risks as well as weight gain and edema. They openly discuss it but feel physicians are largely downplaying their concerns. Some patients begin to become more vocal and reach out to be heard. Negative sentiment rises exponentially. • In 2006, patients start to connect their concerns to congestive heart failure. This year showed early warning signs of problems for the brand. Loss of trust is the next predictable problem. • 2007 was a pivotal year - where patient trust starts to drop dramatically. Patients question their physicians and begin to take control over their medication choices. Patients start referencing GSK, which in our experience is rarely good. Vioxx comparisons are raised and legal action is easily predicted to be the next course of action.
  • 26. Situation Set Up • By 2008, patients display open hostility to the Avandia, GSK, and even their physicians. Legal discussions exploded and overtake diabetes- related conversations in volume. Trust is gone from conversations. • In 2009, patients become more resigned and loss of trust starts to translate to the industry. Patients have stopped listening and new information that could have been used to sway opinions is dismissed. Conversations move from patients to industry analysts, marketers, and consumers who are not patients. • By mid 2010, patients are resolute in their decisions. They are no less angry at Avandia and GSK but are now also angry at the FDA as they see the FDA as not listening either. • At no time during the controversy over the last several years has anyone reached out to the patient base to explain or reassure. Patients tried to decipher complex studies and analyses – and, right or wrong, once they drew their conclusions, they were not going to be swayed otherwise.
  • 28. Situation Set Up Language Intensity Level - Avandia Measure of the Level of Negativity in Patient Reports Low = 0--1 Moderate - 2-3High = 4 - 5 n = 2,111 5 5 5 4 4 4 3 3 2 2 1 1 0 2004 2005 2006 2007 2008 2009 2010
  • 29. Opportunities for Discussion • If this happened in 2012 with the technology available now, what would you do and when? • Who should have been involved in listening, internalizing and possibly engaging? • Listening would have revealed interesting results. How would you like to see your company internalize this type of information? • Should the brand have engaged with patients, physicians, media. And how? Remember engagement doesn’t have to be in kind. • In hindsight, so much is obvious. But there are always higher risk products on the market; maybe those with high benefit but limited populations. Does that change how a brand proceeds? • What are the risks and benefits in learning information that may not be initially well received in the organization?
  • 30. Example Scenarios Jakafi Real data powering product launch
  • 31. Situation Set Up Myelofibrosis Sentiment Index Ratio of Positive Conversations to Negative Conversations Range of Index: -100 (all neg) to 100 (all pos). 0 is neutral 2.0 0.4 0.0 0.0 0.0 -0.3 -2.0 -0.9 -1.8 -4.0 -6.0 N = 1054 Confidence Interval = 95% -8.0 Margin of Error= 2.96% -8.4 -10.0 -9.6 -12.0 -12.5 -14.0 2000-2003 2004 2005 2006 2007 2008 2009 2010 2011
  • 32. Situation Set Up Awareness & Support Index Percent of Treatment Conversations where Patients/Caregivers 14% Discuss Dissatisfaction with Watch & Wait as Treatment Option 13% n = 1054 Confidence Level = 95% Margin of Error = 2.96% 12% 10% 10% 8% 6% 5% 5% 4% 4% 4% 2% 2% 2% 1% 0% 2000-2003 2004 2005 2006 2007 2008 2009 2010 2011
  • 33. Situation Set Up Awareness & Support Index 90% Community Members' Disease Knowledge 78% Percent of Conversations by Knowledge-Level Over Time 80% n = 1054 Confidencel Level = 95% Margin of Error = 2.96% 70% 64% 60% 58% 51% 50% 52% 50% 48% 44% 46% 45% 43% 40% 40% 35% 32% 30% 29% 30% 27% 26% 24% 25% 22% 20% 13% 10% 7% 4% 2% 4% 0% 2000-2003 2004 2005 2006 2007 2008 2009 2010 2011 Zero to Low Knowledge Moderate Knowledge Strong Knowledge
  • 34. Situation Set Up Awareness & Support Index Percent of Conversations on Cancer-Oriented Sites Over Time 70% n = 1054 Confidencel Level = 95% Margin of Error = 2.96% 64% 61% 60% 53% 50% 40% 30% 25% 20% 17% 13% 11% 10% 3% 1% 0% 2000-2003 2004 2005 2006 2007 2008 2009 2010 2011
  • 35. Situation Set Up Pain Points n = 1054 No Cure Confidence Level = 95% 9% More Margin of Error = 2.96% More Information Treatment 25% Options 16% More Watch & Wait Professional 9% Knowledge 14% Caregver/Patient Support More 20% Professional Interaction 7%
  • 36. Opportunities for Discussion • Jakafi is the first treatment option for patients with myelofibrosis that actually treatment the disease rather than just addressing symptoms • Based on what we have shared today, are there recommendations you would make for the brand team? • Should they continue monitoring and why? • Should they engage and how? • Are there things you can think of that stand out as interesting and actionable?