TAI SPARGO
                National Organization for Rare Disorders

                CLARISSA TRUJILLO
                Lun...
Collaborating for Trust:
Pharma, Patient Organizations,
& Social Media
Eileen O’Brien
Director of Search & Innovation, Sir...
How To Influence The Conversation

         Add value
                o    Shareworthy content
         Be trusted




3...
Case Study




4

Proprietary and Confidential   Relationship Marketing Experts for Rare Disorder Therapies
Rare Disease Patient Insights




5

Proprietary and Confidential    Relationship Marketing Experts for Rare Disorder Ther...
Insight 1:
                               Patients with Rare Disorders feel alone and isolated.



Proprietary and Confide...
Insight 2:
                               They seek a connection with others like them.



Proprietary and Confidential   ...
Insight 3:
                               They are primary drivers of diagnosis and treatment.



Proprietary and Confiden...
Insight 4:
                        They use the internet to educate and support each other



Proprietary and Confidential...
Insight 5:
                               They want pharma to participate



Proprietary and Confidential                 ...
Shareworthy Content




11

Proprietary and Confidential   Relationship Marketing Experts for Rare Disorder Therapies
Principles to Create Shareworthy Content

         Listen and Learn
         Orient Around Your Patient’s Journey
      ...
The Situation




     Goal: Attract more targeted patient visits to unbranded disease education
     website for Primary ...
Listen and Learn




        Key Insight: Online intelligence review found patients don’t identify
        with general te...
Orient Around Your Patients Journey




15

Proprietary and Confidential   Relationship Marketing Experts for Rare Disorde...
Educate – Don’t Sell

      Solution:
      Optimize content on the site
      around terms that are
      relevant to PI ...
Measure & Analyze

      Result:
      Upon launch of new content
      and search campaign
            200%             ...
Build Trust Relationships




18

Proprietary and Confidential   Relationship Marketing Experts for Rare Disorder Therapies
Pharma’s Reputation




Source: Epsilon, A Prescription for Customer Engagement, March 2010
N=1,350 U.S. consumers

19

Pr...
Who Do Patients Trust?




Source: Epsilon, A Prescription for Customer Engagement, March 2010



20

Proprietary and Conf...
Trust Agents

                                  A trust agent is a person
                                   with online ...
Find The Trust Agent




22

Proprietary and Confidential   Relationship Marketing Experts for Rare Disorder Therapies
Partner Enables Message Sharing




23

Proprietary and Confidential   Relationship Marketing Experts for Rare Disorder Th...
Participate In The Conversation

      Key Success Factors:
         Provide value
         Consider partnering with a T...
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Collaborating for Trust:Pharma, Patient Organizations, & Social Media

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Presentation by Eileen O'Brien, Siren Interactive and Tai Spargo, NORD and Clarissa Trujillo, Lundbeck

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Collaborating for Trust:Pharma, Patient Organizations, & Social Media

  1. 1. TAI SPARGO National Organization for Rare Disorders CLARISSA TRUJILLO Lundbeck EILEEN O’BRIEN, MS Siren Interactive Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  2. 2. Collaborating for Trust: Pharma, Patient Organizations, & Social Media Eileen O’Brien Director of Search & Innovation, Siren Interactive Tai Spargo Special Projects Coordinator, NORD Clarisssa Trujillo Manager, Communications, Lundbeck 09.28.2010 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  3. 3. How To Influence The Conversation  Add value o Shareworthy content  Be trusted 3 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  4. 4. Case Study 4 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  5. 5. Rare Disease Patient Insights 5 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  6. 6. Insight 1: Patients with Rare Disorders feel alone and isolated. Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  7. 7. Insight 2: They seek a connection with others like them. Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  8. 8. Insight 3: They are primary drivers of diagnosis and treatment. Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  9. 9. Insight 4: They use the internet to educate and support each other Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  10. 10. Insight 5: They want pharma to participate Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  11. 11. Shareworthy Content 11 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  12. 12. Principles to Create Shareworthy Content  Listen and Learn  Orient Around Your Patient’s Journey  Educate — Don’t Sell  Measure and Analyze 12 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  13. 13. The Situation Goal: Attract more targeted patient visits to unbranded disease education website for Primary Immune Deficiency 13 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  14. 14. Listen and Learn Key Insight: Online intelligence review found patients don’t identify with general term ‘primary immune deficiency’, but instead with specific type of PI:  Common Variable Immune Deficiency (CVID)  Wiskott Aldrich Syndrome (WAS) Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  15. 15. Orient Around Your Patients Journey 15 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  16. 16. Educate – Don’t Sell Solution: Optimize content on the site around terms that are relevant to PI patients searching for disease info 16 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  17. 17. Measure & Analyze Result: Upon launch of new content and search campaign  200% lift in traffic to the site  30% increase in registrations for updates 4 times more traffic for pages with CVID language 17 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  18. 18. Build Trust Relationships 18 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  19. 19. Pharma’s Reputation Source: Epsilon, A Prescription for Customer Engagement, March 2010 N=1,350 U.S. consumers 19 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  20. 20. Who Do Patients Trust? Source: Epsilon, A Prescription for Customer Engagement, March 2010 20 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  21. 21. Trust Agents  A trust agent is a person with online influence, strong relationships and a trusted reputation  In the online health space there are organizations who are considered trust agents 21 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  22. 22. Find The Trust Agent 22 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  23. 23. Partner Enables Message Sharing 23 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies
  24. 24. Participate In The Conversation Key Success Factors:  Provide value  Consider partnering with a Trust Agent Benefit:  Influence the conversation and the relationship with your brand Remember:  It’s not about you – it’s about the patient 24 Proprietary and Confidential Relationship Marketing Experts for Rare Disorder Therapies

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