talking? •Where does it take place? •What is being discussed? EXISTING RESEARCH AND DOCUMENTATION •Inspiration market research •Packaging research •Secondary industry research WHAT WE LOOKED AT
of sources • Many hemophilia communities are dormant, lacking active, vibrant dialogues IS THE CONVO? how big Daily Strength Hemophilia Group 19 threads MD Junction Hemophilia Group 16 threads
there are “Advice-seekers” in the conversation - Very few advice-seeking posts go unanswered, and typically these requests receive multiple responses but WHEN SPECIFIC ADVICE IS SOUGHT… Q? Q? A! A! A! A! A! A! A! A! A! A! A! A! A! …THE COMMUNITY IS HIGHLY ENGAGED & RESPONSIVE
information, research • Extraordinarily tech-savvy • Empowered, very involved in treatment decisions • Confident in self-assessment • Knowledgeable about medical research and product manufacturing processes who IS TALKING ONLINE?
sponsors a ‘Blood Brotherhood’ members forum Currently has over 229 active members, depth of conversation Currently has over 229 active members, depth of conversation Participation in the community is strictly limited to patients Participation in the community is strictly limited to patients Conversation is frank, unedited, personal Conversation is frank, unedited, personal ARE THEY TALKING? where
caregivers The NHF’s site, Hemophilia.org, contains discussion boards for patients and caregivers Majority of conversation is around new diagnosis Majority of conversation is around new diagnosis 296 members 296 members ARE THEY TALKING? where
patient-created hemophilia community site Site includes personal blogs, multimedia submissions, and RSS feeds from across the web Site includes personal blogs, multimedia submissions, and RSS feeds from across the web 649 members 649 members ARE THEY TALKING? where
loyalty typically reserved for one’s biological family Hemophilia is a Family Affair… lets stand united as ONE my brothers. Hemophilia is a Family Affair… lets stand united as ONE my brothers. Even though I don't know you guys personally, I feel like you guys get me better than some folks that have known me my whole life. Even though I don't know you guys personally, I feel like you guys get me better than some folks that have known me my whole life. Welcome to the family…if you need ANYTHING, just email, call, we’re here for you. Welcome to the family…if you need ANYTHING, just email, call, we’re here for you. Keep your head up bro… we all have you in our prayers and are thinking about you daily Keep your head up bro… we all have you in our prayers and are thinking about you daily CONVERSATION IS FAMILIAL, EMOTIONAL 1
“Brother,” and, “Brotherhood,” appear frequently I have found "Brothers from another mother” all over the country, and I LOVE IT!! Brothers unite, we’re bound together by this! I, and by extension the Blood Brotherhood, is here FOR YOU and you can lean on us at any time!! Loyalty to the brotherhood is so profound – some patients go so far as to tattoo the ‘blood brother’ emblem onto their bodies
cannot make anyone not living the life understand it… Ours is a surprisingly private hell. -- PATIENT BLOG We all have hemophilia. We are equally affected by that which afflicts us…We are HEMOPHILIACS! We are BLEEDERS! - Expressed desire for privacy, legitimacy in patient communities - Patients discuss controversial topics such as self-medication techniques, loopholes in insurance system, and their opinions of HTC’s and physicians - Very sensitive to origin of information - “insiders” vs. “outsiders”
advanced in last 20 years - Community is highly optimistic that major advancements in the disease will be realized in the near future Older dude's had a TOUGH road to run…we are deriving the benefit of all the HELL they went through. Hopefully the generation behind us, will benefit even MORE...!!!! Older dude's had a TOUGH road to run…we are deriving the benefit of all the HELL they went through. Hopefully the generation behind us, will benefit even MORE...!!!! One of the reasons I survived some of my more dramatic hemorrhages is because I knew my grandfather had survived even worse. One of the reasons I survived some of my more dramatic hemorrhages is because I knew my grandfather had survived even worse. I am very proud of the way the medical field has developed and just how far we have come, trust me hunny, we have come a long way. I am very proud of the way the medical field has developed and just how far we have come, trust me hunny, we have come a long way. We're living longer, more productive lives than previous generations.. There are going to be firsts happening soon, MANY of them! We're living longer, more productive lives than previous generations.. There are going to be firsts happening soon, MANY of them! 6. OBLIGATION TOWARDS ADVOCACY OVERWHELMING SENSE OF OPTIMISM 5
THE HEMOPHILIA AUDIENCE’S NEEDS ONLINE HEMOPHILIA CONVERSATION •How big is the conversation? •Who is talking? •Where does it take place? •What is being discussed? EXISTING RESEARCH AND DOCUMENTATION •Inspiration market research •Packaging research •Secondary industry research THESE AUDIENCE NEEDS PROVIDED US WITH A LENS TO EVALUATE THE ONLINE LANDSCAPE THESE AUDIENCE NEEDS PROVIDED US WITH A LENS TO EVALUATE THE ONLINE LANDSCAPE
keywords into our proprietary search engine indexing technology to identify the sites that are most relevant. We then conduct qualitative and quantitative analysis on these sites. *Over 350 total sites were analyzed
treatment information • Treatment options that exist • Identify patient and caregiver communities • Access to physicians and HTC’s EDUCATION & INFORMATION ADVOCACY & OUTREACH TREATMENT- RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS NEEDS VARY ALONG THE HEMOPHILIA JOURNEY ADVOCACY & OUTREACH TREATMENT-RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS
& OUTREACH EMOTIONAL NEEDS ADVOCACY & OUTREACH TREATMENT-RELATED DAY-TO-DAY LIFE EMOTIONAL NEEDS NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • General disease and treatment information • Support for newly diagnosed • Treatment options that exist • Support communities • Access to physicians and HTC’s
disease education content • Global treatment center directory • News and program updates • Approx. 2,538 monthly visits, Average length of stay on site 3:26
disease education content • Advocacy information and research publications • HCP content • Approx. 9,116 monthly visits, Average length of stay on site 4:30
events and information • Patient and caregiver programs, “voices” • News and links to other community groups • Approx. 600 monthly visits, Average length stay on site 3:02
advocate Laureen Kelley created site • Baxter and Accredo are site sponsors and advertise products on the site • HemaBlog, ProjectShare, and links to scholarships and publications • 2,079 monthly visits, Average 2:02 stay
family information site • Links to various support programs for patients • “Coalition Program” solicits enrollment for future messaging • Less than 500 monthly visits
and testimonials • Opportunity to find a Baxter rep via the site – no interaction on site • Info about managing hemophilia • Less than 500 monthly visits
EMOTIONAL NEEDS NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • Connection to larger hemophilia community • Experiences from other patients/caregivers • Opportunities to network with community • Mentorship from patients • Family and relationship counseling • Reassurance from nurse/hematologists
and resources • Targeted information for moms and caregivers • Stories and testimonials • Less than 500 monthly visits, Average length of stay on site < 0:30
DAY-TO-DAY LIFE NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • School and career planning • Tips for practically managing disease impact • Financial support – scholarships, grants, etc. • Travel facilitation • Sports and activity information • Diet, nutrition, and exercise • Supportive products— compression, medic bracelet, etc
Includes tips for living with and managing the disease • Printable, no interactivity BeneFIX.com NHF SPORTS RATING CHART • List of sports activities and their ratings • Compiled in easy-to-take format, printable • Lacks interactivity
Games and quizzes – Kid-K interactive game • Photo galleries, sports information • Guide for teachers and parents on school tips and management • Less than 500 monthly visits, Average length of stay on site <0:30
living with disease • Video and multimedia content about fitness and nutrition • Factor Tracking app for monitoring disease • Approx. 1,500 monthly visits, Average length of stay: 0:45
and applications • Stories of hope for patients with chronic disease • Patient programs and donor matching program Kelleycom.com SCHOLARSHIP LIST • Third party listing of available hemophilia scholarships and links to external sites FINANCIAL NEEDS
OUTREACH TREATMENT- RELATED NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • Product comparisons and recommendations • Administration support and coaching • Paying for treatment and reimbursement • Monitoring and tracking progress with treatment • Managing treatment inventory • Emergency access to treatment
only a minority of patients currently use electronic treatment logs. While many of their HTC’s recommend them, patient adoption remains low. Patients cited issues such as insufficient functionality and non-intuitive interfaces or devices as primary concerns with existing solutions. – MRB Survey on Hemophilia Care & Price Monitoring United States, May 2008
& OUTREACH NEEDS VARY ALONG THE HEMOPHILIA JOURNEY • Contribute towards global treatment access • Attend advocacy events • Stay aware of latest advocacy initiatives and legislative issues • Promote greater public disease awareness and education • Community leadership • Identify and participate in clinical trials
AMERICA • Advocacy events and information • Patient and caregiver, “voices” compilation of real experiences • Advocacy in a box program • Link to participate in legislation advocacy (send letter)
icing my bleeds – its supposed to be for athletes, but it really helps… I’ve tried the “Game Ready” contraption for icing my bleeds – its supposed to be for athletes, but it really helps… I've developed my own computer model for calculating my factor level. It can also tell me when my level will reach my critical level (for me- 35%). I've developed my own computer model for calculating my factor level. It can also tell me when my level will reach my critical level (for me- 35%). This might help…I’ve been peeling the labels off product vials after I use them, and then I stick them to a calendar This might help…I’ve been peeling the labels off product vials after I use them, and then I stick them to a calendar I have my medic alert info tattooed on my wrist, so no more dealing with bulky bracelets I have my medic alert info tattooed on my wrist, so no more dealing with bulky bracelets
labels come on the boxes and something would automatically log my infusions… Imagine if you could just scan whatever labels come on the boxes and something would automatically log my infusions… Would love it if I didn’t have to think about ordering supplies constantly…if it just happened like magic. Would love it if I didn’t have to think about ordering supplies constantly…if it just happened like magic. I’d love to be able to do a study and easily calculate my half life – anyone have any experience with this? I’d love to be able to do a study and easily calculate my half life – anyone have any experience with this?
•Existing solutions are primitive •Fragmentation of overall landscape persists Key audience needs still remain unmet Key audience needs still remain unmet •Community bias towards “for us, by us” approach •Recognize the innate desire for authenticity, skepticism towards outsiders •No brand loyalty or enthusiasm pervades For a brand to become relevant, a fresh approach is necessary For a brand to become relevant, a fresh approach is necessary •Inherently tech-savvy audience •Existing solutions lack engagement •Collaborative, innovative nature of the community Digital innovation is ripe for creating real impact Digital innovation is ripe for creating real impact
mktantum
geeforr
soudai
jrom
chriscoyier
kastner
jlugia
thekraken
62gerente
eileencodes
ddemaree
geoffreycrofte
