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Support Without Borders: The Ovarian Cancer Online Community

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Inspire CEO Brian Loew presents online research data to the national conference of the Ovarian Cancer Research Fund Alliance (OCRFA), an Inspire partner. The conference session took place July 10, 2016, in Washington, DC.

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Support Without Borders: The Ovarian Cancer Online Community

  1. 1. THIS DOCUMENT IS CONFIDENTIAL PAGE 1 Support Without Borders The Ovarian Cancer Online Community OCRFA.inspire.com Brian Loew CEO, Inspire July 10, 2016
  2. 2. THIS DOCUMENT IS CONFIDENTIAL PAGE 2 Social media and health…some numbers of internet users say they looked online for health information within the past year (Source: Pew Research Center) • The most commonly-researched topics are specific diseases or conditions; treatments or procedures; and doctors or other health professionals • 50% of health information research is on behalf of someone else of consumers say that information found via social media affects the way they deal with their health (Source: Mediabistro) 72% 40%
  3. 3. THIS DOCUMENT IS CONFIDENTIAL PAGE 3 Connected Patients Tend to See Better Outcomes A growing body of scientific and anecdotal evidence supports our belief that patients who have the skills and confidence to become actively engaged in their healthcare have better health outcomes and experiences.
  4. 4. THIS DOCUMENT IS CONFIDENTIAL PAGE 4 Healthcare is becoming more consumer driven & patients are playing more of a role in their health Patients are increasing technology use in relation to their health Social media is situated to be a key way to engage with patients and opportunity to offer them a personalized experience Patient centricity and social media
  5. 5. THIS DOCUMENT IS CONFIDENTIAL PAGE 5 Inspire overview • Leading social network for health that connects patients and caregivers in a safe, permission-based manner. • 200+ support groups for people affected by many different conditions including cancer, rare diseases, and many others. • About 65% of members are patients and about 30% are caregivers. Started in 2005 100 patient advocacy partners 800,000+ members 2,000,000 reported medical conditions 8,000,000 posts
  6. 6. THIS DOCUMENT IS CONFIDENTIAL PAGE 6 Support without Borders • Inspire members can connect with other members in cities and states across the nation and globe 24 hours a day, seven days a week • Inspire helps members with fewer resources, whether due to geography, socio-economic, or other reasons, to obtain health information that is otherwise difficult to find • Inspire can help reduce the feeling of isolation that many people feel when facing cancer and other diseases
  7. 7. THIS DOCUMENT IS CONFIDENTIAL PAGE 7 • 275,000 members with or affected by cancer • 36 cancer-related groups on Inspire • 350+ million words written by members of cancer support groups on Inspire Inspire Cancer Community cancer.inspire.com/engage
  8. 8. THIS DOCUMENT IS CONFIDENTIAL PAGE 8 Insights from Inspire’s 2nd annual member survey • 10,150 inspire members completed the survey • 41% of survey respondents are affiliated with one of our cancer communities • Cancer was the most represented therapeutic category among all survey respondents • Nearly 90% of survey respondents reported using social media • About 40% of respondents belonging to one of our cancer communities reported asking for or receiving healthcare-related advice on social media • Respondents most often seek advice on treatment options, and the advice they get tends to influence their healthcare decisions • 40% of respondents who belong to a cancer community confirmed that they offer health- related advice on social media
  9. 9. THIS DOCUMENT IS CONFIDENTIAL PAGE 9 OCRFA Online Support Community • Launched in 2007, now with over 30,000 members • Since that time the group has had nearly 684,000 posts • Members learn about: • Learn about the latest treatments and clinical trials • Get tips for managing their disease • Share emotional support with others who understand • Help each other advocate for the best care possible
  10. 10. THIS DOCUMENT IS CONFIDENTIAL PAGE 10 The Depth of Healthcare Social Networks • The average number of characters per post on Inspire is over 16 times as high as the most common post length on Facebook, and almost 11 times as high as on Google+. 0 400 800 1200 1600 2000 Inspire Posts Facebook Posts Google+ Posts Inspire Comments
  11. 11. THIS DOCUMENT IS CONFIDENTIAL PAGE 11 Teal Sister Discussions • There have been nearly 95,000 posts in the Ovarian Cancer Community in the last year Topics New Discussions Treatment 936 Recurrence 753 Side effects of treatment 680 What, me worry? 398 Help desk 363 Newly diagnosed 302 Research 273
  12. 12. THIS DOCUMENT IS CONFIDENTIAL PAGE 12 Connecting with Other Members • Inspire members can search for other members by zip code, age, state and gender Explore members in This community Gender Members near you Age
  13. 13. THIS DOCUMENT IS CONFIDENTIAL PAGE 13 Ovarian Cancer Community Word Cloud
  14. 14. THIS DOCUMENT IS CONFIDENTIAL PAGE 14 Sisterhood “It really hit me today how much all of you mean to me. To be able to get on this site every night while I'm laying in bed before sleep has become a habit and one I have come to depend on very much…You all have taught me so much. Not only about this disease…but how to handle my chemo, what to pack for the hospital visit, anything and everything I’ve asked of you, you have come back and given me a valuable answer….But most of all, I feel a sense of Sisterhood.”
  15. 15. THIS DOCUMENT IS CONFIDENTIAL PAGE 15
  16. 16. THIS DOCUMENT IS CONFIDENTIAL PAGE 16 Ovarian Cancer Patient/Caregiver Experience Survey Background • Purpose: To bring the perspectives of those with Ovarian Cancer and their caregivers to life on a large scale. • Launch: After about a month of planning and coordination with the Ovarian Cancer Research Fund Alliance, Inspire sent invitation emails to members of the Ovarian Cancer National Alliance Support community. • Fielding: The survey was available for members to take from May 4th – 27th. • Impact: During the nearly three week period in which the survey was available, 492 Inspire members completed the assessment.
  17. 17. THIS DOCUMENT IS CONFIDENTIAL PAGE 17 • Of the 492 ovarian cancer patients and caregivers who responded to this survey: 85% 15% Patients Caregivers 6% 94% Caregiver relationship to patient % caregivers Spouse/partner 39% Son/daughter 38% Brother/sister 15% Mother/father 7% Friend 1% 1% 3% 13% 34% 37% 12% 1% 0% 20% 40% 60% 80% 100% <30 30-39 40-49 50-59 60-69 70-79 80+ Age of respondents Ovarian Cancer Patient/Caregiver Experience Survey Respondent Overview
  18. 18. THIS DOCUMENT IS CONFIDENTIAL PAGE 18 Ovarian Cancer Patient/Caregiver Experience Survey Respondent Overview (cont.) • Of the 492 ovarian cancer patients and caregivers who responded to this survey: 22% 25% 1% 2% 3% 53% 0% 20% 40% 60% 80%100% I don't know/Not sure Other Stromal carcinoma Small cell carcinoma Germ cell carcinoma Epithelial 3% 8% 22% 18% 26% 5% 2% 3% 1% 1% 7% 1% 3% 0% 20% 40% 60% 80% 100% Don't know/Not sure In remission IIIC IIIA IIB IC IA Type(s) of diagnosed tumors Current ovarian cancer stage
  19. 19. THIS DOCUMENT IS CONFIDENTIAL PAGE 19 Clinical Trial Participation • Roughly 1/4th of respondents reported participating in a clinical trial for ovarian cancer – these patients primarily learned about the trial from their doctor/treatment center • Only a relatively small amount of patients learned about the trial from online/other sources 24% 75% 1% Yes No Don't know/Not sure 13% 14% 14% 22% 36% 0% 20% 40% 60% 80% 100% Not sure/don't know a lot about clinical trials Wanted to participate but couldn't get into a… Didn't know that enrolling in a clinical trial was an… Other Didn't need or want to be in a clinical trial Reasons why not in trial
  20. 20. THIS DOCUMENT IS CONFIDENTIAL PAGE 20 Perceived Impact of Ovarian Cancer on Patients • There is a difference in patient and caregiver perception of the impact of ovarian cancer on patients’ lives; interestingly, but not surprisingly, caregivers feel there is a greater impact on their loved one than those with the disease On a scale of 1 to 7, the average perceived impact of ovarian cancer on their lives as reported by patients was 5.69 On the same 1 to 7 scale, the average perceived impact of ovarian cancer on patients’ lives as reported by caregivers was 6.35 75% 57% 52% 50% 49% 47% 45% 44% 26% 5% 0% 20% 40% 60% 80% 100% Physical fitness Ability to work Ability to complete household tasks Finances Social life (e.g. ability to go out) Romantic relationships Relationships with friends Relationships with family members Other None of the above Life Areas Affected by Ovarian Cancer
  21. 21. THIS DOCUMENT IS CONFIDENTIAL PAGE 21 Perceived Impact of Ovarian Cancer on Caregivers • 85% of ovarian cancer patients responding to the survey indicated that they have a family member or friend who helps them manage their condition 79% 43% 38% 32% 4% 0% 20% 40% 60% 80% 100% Spouse/partner Friends Other family members Adult child Other Who is a caregiver? Patients and caregivers also have varying opinions on the impact of ovarian cancer on the caregivers’ lives – while the average perceived impact reported by caregivers on a scale of 1 to 7, was 6.17, patients indicated it was lower, 4.56, on average Patient Perceptions Caregiver Perceptions 35% Social life 50% 17% Relationships with family members 47% 18% Relationships with friends 30% 23% Ability to work 41% 31% Romantic relationships 34% 35% Finances 31% 12% Physical fitness 32% 14% Ability to complete household tasks 19% 27% Other 43%
  22. 22. THIS DOCUMENT IS CONFIDENTIAL PAGE 22 Sources of Information Used for Ovarian Cancer • Those affected by ovarian cancer most frequently reported turning to their doctor(s), the OCNA website, online search engines and the Ovarian Cancer Support Community on Inspire for information about the disease % respondents Physician or healthcare provider 65% Ovarian Cancer National Alliance website (www.OvarianCancer.org) 64% Online search engines (e.g., Google, Bing) 60% Ovarian Cancer Support Community on Inspire 60% Nurses 43% Medical/scientific articles 38% Materials provided by the doctor’s office 32% WebMD 29% Books or magazines 28% Friends and family 26% National Institutes of Health 25% Ovarian Cancer Research Fund website (http://ocrfa.org) 23% Blogs 20% In-person patient support groups 18% % respondents Facebook 16% PatientsLikeMe 16% Mayo Clinic 14% Foundation for Women's Cancer Website (http://www.foundationforwomenscancer.org/) 11% Other 11% OOCNA events (e.g., Ovarian Cancer National Conference) 10% YouTube 7% Medicinenet.com 5% Videos 4% Pinterest 1% OCNA Instagram 1% OCNA LinkedIn 1% OCNA Twitter account 1%
  23. 23. THIS DOCUMENT IS CONFIDENTIAL PAGE 23 Information Sought by Ovarian Cancer Patients and Caregivers • Overwhelmingly, when those with ovarian cancer or their caregivers turn to any of the previously reviewed sources of information, they are looking for either treatment-specific information or information about the disease itself 9% 9% 11% 21% 22% 24% 83% 86% 0% 20% 40% 60% 80% 100% Other Insurance reimbursement support materials Information on pharmaceutical-sponsored, patient support programs Information on patient support groups Support materials for family members/friends detailing your condition and its symptoms Tips/tactics around better ways to communicate with your healthcare providers Disease-specific information Treatment-specific information
  24. 24. THIS DOCUMENT IS CONFIDENTIAL PAGE 24 Discussing and Choosing Ovarian Cancer Treatments • Physicians are largely responsible for initiating and guiding the ovarian cancer treatment decision making process Doctor Patient Caregiver Other Other HCP 53% 36% 5% 3% 2% Who initiates treatment discussions 28% 14% 24% 6% 18% 9% 0% 20% 40% 60% 80% 100% Every visit Every other visit Couple times a year Once a year Never Don't know/not sure How treatment decisions are made Entirely by doctor Entirely by patient/care giver In collaboration with doctor Mostly by doctor Mostly by patient/care giver 5% 9% 67% 9% 10% Frequency of treatment discussions
  25. 25. THIS DOCUMENT IS CONFIDENTIAL PAGE 25 Ovarian Cancer Treatment Priorities • While nearly 1/2 of respondents indicated that living longer was the most important treatment outcome, patients and caregivers also ranked stopping disease progression high on their list Most Important Live longer 47% Stop disease progression 20% Minimize the risk of disease recurrence 15% Have a better quality of life 14% Slow disease progression 2% Be more active 1% Minimize treatment side effects 1%
  26. 26. THIS DOCUMENT IS CONFIDENTIAL PAGE 26 Benefits of Belonging to Inspire’s Ovarian Cancer Support Community • Getting information about ovarian cancer is perceived to be the top benefit(s) of belonging to the Inspire ovarian cancer support community 5% 7% 47% 53% 54% 57% 66% 78% 0% 20% 40% 60% 80% 100% None of the above Other Providing emotional support to other patients Learning about ovarian cancer clinical trials and treatment options Answering questions and participating in discussions with other patients Receiving emotional support from other patients who understand what I'm going through Being able to ask questions that other patients can answer Learning tips, resources, and other information that helps me manage my ovarian cancer
  27. 27. THIS DOCUMENT IS CONFIDENTIAL PAGE 27 Thank you! Learn more about ovarian cancer community: ovariancancer.inspire.com Partnership inquiries: partner@inspire.com Content advertising & community engagement inquiries http://corp.inspire.com/life-science-organizations/

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