Thanks to the Pew Internet Foundation, we have a lot of data about ePatients. These empowered, engaged and educated patients (and families) are helping to bring about a transformation of healthcare in this country. Pew’s Susannah Fox has named them “healthcare superheroes.”

Through our experience at Siren Interactive, we know a lot about rare disease patients who are supercharged ePatients. These patients are hyper-empowered. Because they have to be. Leading up to Rare Disease Day on February 29, 2012 (a rare day indeed) I’d like to celebrate some of the amazing accomplishments of a few rare disease communities.

Rare disease patients start clinical trials
Team Sanfilippo Foundation is a nonprofit medical research foundation started by a group of parents with the mission of finding potential therapies that can be tested clinically in the near future. Team Sanfilippo used social media to beat out thousands of others to win $250,000 from the Pepsi Refresh Project. The grant funded a clinical trial led by Dr. Haiyan Fu of the Research Institute at Nationwide Children’s Hospital in Columbus.

Rare disease patients recruit for research studies
After Katherine Leon was diagnosed with spontaneous coronary artery dissection (SCAD), a poorly understood heart condition that affects a few thousand Americans every year, she went online. Via online communities Leon was able to connect with a few similar women. Leon approached the Mayo Clinic’s Sharonne Hayes, MD, about how she could help spur more research into SCAD. Dr. Hayes was inspired to start a research study, with a recruitment goal of 12 patients. Leon spread the word via online communities and within a week had recruited 18 volunteers. Due to the strong interest, Mayo has launched a bigger trial with 200 SCAD patients and an equal number of their close relatives.

Rare disease patients change laws
Bill and Nicole Morris successfully advocated for the passage of Greyson’s Law (HB 1795) to ensure that Texas screens newborns for 52 disorders. This effort was driven by the memory of their son, Greyson, who died of Krabbe disease, a rare inherited degenerative disorder of the central and peripheral nervous systems.

Rare disease patients start their own biotech companies
After an Israeli biotech company stopped working on a promising medication, two US families bought the drug and decided to develop it themselves as a possible treatment for their children’s Duchenne muscular dystrophy. The company, Halo Therapeutics, has been granted orphan drug status for the therapy.

This year, with more accomplishments, increased media exposure and higher awareness of rare diseases, we certainly have something to celebrate and inspire us to go further. These are only a few examples of the power of rare disease patients; please share more stories in the comments below.

(Image courtesy of Victor Bezrukov on Flickr).

According to the last US census, one in six Americans are now Hispanics, and this figure is rapidly growing. Although all the speakers were excellent, I’m going to share insights from the presentation that focused on pharma and a few other facts. Eric Talbot, who spent a dozen years in pharma and is currently at Univision, started his talk with the fact that about 69% of Hispanics have health insurance and currently represent 9% of the US adult pharmaceutical market. This is a growing market and represents an opportunity.

From 2006 to 2011 Latin health search keyword queries grew 588% per Google. Television (33%) and online (29%) are the main media sources of health for Hispanics. Interestingly, 78% of Hispanics use search engines to find more info on something they saw on TV. In terms of digital, with Spanish ads a Spanish landing page is preferred, but Talbot noted that even with an English page the bounce rate is not huge. It’s important to note that overall 80% of Hispanics search using mobile devices.

A gap in diagnosis
Comparing the patient journeys of Hispanics to Caucasians from diagnosis to adherence, the biggest gap was in diagnosis. Both groups have similar treatment and adherence rates. According to Talbot, the opportunity for pharma is to increase awareness and provide education to accelerate and increase diagnosis. Talbot noted that less than 1% of direct to consumer ad dollars by pharma is spent on the Hispanic marketing, and many major brands have no online Spanish presence.

Although many Hispanics speak English, Talbot shared a study that showed watching TV ads in English garnered less brand awareness and decreased understanding of the medical concepts.

Language is not the only potential barrier to reaching Hispanics; there are also cultural differences. To illustrate this, Talbot screened two Flomax commercials: one in English and one in Spanish. The English-language ad focused on the discomfort the man felt while the Spanish-language ad focused on the husband’s responsibility to his family to go to the doctor. The Spanish-language ads were very successful, resulting in a 250% increase in Flomax.

Overall, it’s an interesting idea in this time when the US marketing as a whole is getting saturated. What do you think?

YouTube is gonna be even bigger
The event also made clear that Google has recruited quality partners to make serious investments in developing content for YouTube. A number of speakers made the point that we were on the cusp of something big, and that instead of thinking of developing for a specific medium (TV, digital, etc.) it’s all about developing good content. Ben Silverman, former NBC head who has a company partnering with YouTube, said, “It used to be a broadcast-centric model; now it’s a consumer-centric model.”

(Image courtesy of Eileen O’Brien).

In anticipation of Rare Disease Day on February 29, we are honored to share this guest post by Terri Granard. She is a caregiver for her son, Eli, who was diagnosed with the rare chromosomal abnormality Ring 14, and one of the authors of the book Uncommon Challenges; Shared Journeys.

We all have something to deal with in our lifetime and you do the best you can with what you’ve got. It’s just life; that’s how it is. I’m one of many moms around the world who’s the caregiver of a child with a rare disease or disorder. My son, Eli, was diagnosed with Ring 14 (chromosome ring 14 deletion syndrome) when he was six months old after suffering a stroke and seizure. There are fewer than 300 people worldwide who have this rare condition.

Eli can suffer from one to 10 or more daily seizures that may include body tremors, major body thrashing and apneic episodes that cause him to stop breathing and require oxygen. A vagus nerve stimulator implanted in his chest sends waves to the brain to “interrupt” a major seizure. Because of the strokes and seizures, Eli has had to learn and relearn basic skills like walking and sign language.

There is no cure or drug therapy for Ring 14. The greatest spark of hope comes from a research project in Rome launched in 2006. Using the child’s own stem cells rather than embryonic cells, we’re hoping to find a way for stem cells or bone marrow to duplicate normal cells, or find a way for stem cells to rejuvenate.

Knowing what I know and having experienced all that I’ve tackled, I ask myself how I can best help a future parent who will be in my shoes at some point down the road. I’ve decided that the biggest contribution I can make is to help increase awareness of Ring 14, and let people know that it’s one of many diseases that can be detected through newborn screening.

Newborn screenings
Newborn screenings are done when the baby is two days old. A nurse pricks the baby’s heel to collect a few drops of blood, which are analyzed to detect various diseases and disorders. Since individual states regulate newborn screening, the diseases that are screened vary considerably from state to state in the US. All 50 states screen for congenital hypothyroidism, galactosemia, and phenylketonuria (PKU). Organizations such as the March of Dimes and the American College of Medical Genetics suggest more than two dozen additional tests. The most thorough screening panel checks for about 40 disorders.

Newborn screening would have shown that Eli would develop Ring 14. Although it wouldn’t have changed the inevitable, it would have provided my husband and me with peace of mind and helped us anticipate what we would be facing. I would have been better prepared to care for him sooner.

Sharing support
We first learned about this disorder after searching the internet and reaching out to other parents of children with similar illnesses. I’ve become an advocate for children diagnosed with Ring 14 and other metabolic problems. I counsel parents about what to expect and where to find available resources. Some of my closest relationships are with people we’ve met online. Eli and I have flown from Los Angeles to Tennessee twice to visit a family that has a child with Ring 14. It’s like meeting someone who has not only the same blood type as you, but the same fingerprints. I talk with people from all over the world—and I use Google Translator a lot!

Ring 14 outreach
We recently established a non-profit, Ring 14 USA Outreach, to help raise awareness, research funds and provide support for children affected with Ring 14. Plus, we just launched our new web site (http://Ring14usa.net). I’m partnering with five other mom caregivers across the country from Virginia, Washington, D.C., Pennsylvania, Oklahoma and Florida, to promote it. We have a few sponsors and we’re looking for more.

Eli is an angel. He’s happy. He enjoys his life. Like any mom, I want the best for my son. I’m doing whatever I can to provide the best care for Eli, help others by sharing my experience, and support research to find a treatment or cure for Ring 14. It’s about giving people hope, even if it’s a shot in the dark. There are advances in medicine every day. That’s why Eli is alive. You have to look to other parents, and you have to be there for each other.

(Image courtesy of Terri Granard).

ddwebster: I am Dana Webster, guest moderator for tonight’s #socpharm tweetchat #epharma #hcmktg

ddwebster: Please join us for tonight’s #socpharm discussion RT @TwtrChat411: @EileenOBrien: moderates now the #SocPharm chat

EileenOBrien: I know @ddwebster: has some good topics planned for tonight’s #socpharm so don’t just lurk – say hello!

ddwebster: Drug shortages, formulary changes, post-marketing clinical trials, HCPs firing pts all on dockett for #socpharm tweet chat this evening

EileenOBrien: @ddwebster: I like that last one #SocPharm

smerv: RT @ddwebster: : Drug shortages, formulary changes, post-marketing clinical trials, HCPs firing pts all on dockett for #socpharm tweet cha …

crshorizon: I wasn’t lurking… I just got here:) Hello! Chuck #SocPharm

ddwebster: welcome to tonight’s #socpharm tweet chat. We’ll assume that all tweets are your own and do not reflect your employer’s or client’s opinions

ddwebster: @crshorizon: Hello, Chuck! Welcome to the #socpharm tweetchat this evening

crshorizon: @ddwebster: Thanks – good to be here! #SocPharm

ddwebster: Let’s get started! T1: WSJ reports on Peds firing pts over refusal to receive vaccines. Thoughts? #socpharm http://t.co/UEuk8FgG

ddwebster: @smerv Thank you for the RT! Hope you’ll be joining our #socpharm chat this evening

ddwebster: T1: @WSJ reports increase in peds refusing to see pts when vaccines not received (against AAP guidance). Who’s right? #socpharm

EileenOBrien: @ddwebster: drs fire pts all the time, interesting new reason though. Btw I’m pro-vaccine #socpharm

EileenOBrien: @ddwebster: both are “right” and have choices #socpharm

ddwebster: Yes, they do! Pts fire docs frequently, too. RT @EileenOBrien: : drs fire pts all the time. Btw I’m pro-vaccine #socpharm

EileenOBrien: RT @ddwebster: : Let’s get started! T1: WSJ reports on Peds firing pts over refusal to receive vaccines. Thoughts? #socpharm http://t.co/UEuk8FgG

crshorizon: No reason physicians shouldn’t also be empowered. Smart/respectful dialogue w/patient about +/-’s of vaccines is good. #SocPharm

ddwebster: RT @crshorizon: : No reason physicians shouldn’t also be empowered. Smart/respectful dialogue w/pt about +/-’s of vaccines good. #SocPharm

ddwebster: T1: Are these MDs concerned w/liabilities if pts afflicted w/disease associated w/not receiving vaccine? #socpharm

EileenOBrien: My mom is an RN and she got “fired” from internist for “being too demanding”. She now sees more collaborative dr & is happier #SocPharm

lucybrown2650: Hi I’m joining #socpharm 4 the 1st time. Drs. should have the right to choose their pts. since pts. have the right to choose their drs.

ddwebster: @lucybrown2650 Welcome to #socpharm tweetchat! Thanks for joining the conversation.

ddwebster: T1: in my field days, there were many MDs firing non-compliant diabetic pts who wouldn’t heed advice #socpharm

EileenOBrien: Think it’s that these pts are “uncooperative” per WSJ #socpharm

crshorizon: @ddwebster: Sounds like they’re also on hotseat for possible link between vaccines and autism. #SocPharm

ddwebster: @crshorizon: Data yet to show a correlation. More & more parents opting out of vaccines may correlate to increase pt firings #socpharm

ddwebster: @crshorizon: Data yet to show a correlation. More & more parents opting out of vaccines may correlate to increase pt firings #socpharm

ddwebster: T2: news coverage of key drugs shortages this wk. 2 wk supply left for methotrexate in US-treats many cancers. What is the impact? #socpharm

ddwebster: T2: I faced an etoposide shortage when receiving my stem cell transplant in August. Terrified outcomes would be affected #socpharm

ddwebster: RT @EileenOBrien: : Mom is an RN & got “fired” from internist for “being too demanding”. Now sees more collaborative dr & happier #SocPharm

crshorizon: @ddwebster: with gaps in medical knowledge/genetics, maybe a vaccine does negatively affect some pts. #SocPharm

ddwebster: @crshorizon: Absolutely. Clinical data shows what statistics support, but no barometer on how each individual will react #socpharm

EileenOBrien: @ddwebster: omg that’s terrible – situation is stressful enough #SocPharm

ddwebster: Yes, glad ativan was on Rx list for transplant RT @EileenOBrien: : @ddwebster: omg that’s terrible – situation is stressful enough #SocPharm

EileenOBrien: @ddwebster: I don’t know enough about manufacturing – how can these shortages be prevented other than diversification? #socpharm

ddwebster: T2: news piece states that pharma manufacturers prefer to make higher profit drugs at expense of lower profit, generic meds #socpharm

crshorizon: @ddwebster: I can only imagine how difficult that must have been. How did you manage through it? #SocPharm

ddwebster: T2: @USAToday coverage of methotrexate shortage & possible effect on ped pts w/ALL leukemia http://t.co/O6INewaP #socpharm

ddwebster: T2: @USAToday coverage of methotrexate shortage & possible effect on ped pts w/ALL leukemia http://t.co/HsBptnrs #socpharm

ddwebster: @crshorizon: T2: I was heavily medicated. 4 days of high dose chemo (normally lethal) followed by life-saving transplant #socpharm

ddwebster: @crshorizon: T2: about to celebrate 6 months since transplant. Anxiety back as next scan approaches. #socpharm

EileenOBrien: @ddwebster: tx for sharing link. Looks Iike FDA is trying to help #socpharm

crshorizon: @ddwebster: Sending you prayers and positive vibes! #SocPharm

EileenOBrien: #socpharm I know drug shortages are a hot topic as upcoming HBA (Healthcare Businesswomen’s Assoc) event in Philly is having event on it.

ddwebster: @EileenOBrien: Yes. Appears manufacturing problems at root of issue. How do we avoid these situations/preserve product integrity? #socpharm

ddwebster: RT @EileenOBrien: : #socpharm Drug shortages are a hot topic at upcoming HBA (Healthcare Businesswomen’s Assoc) event in Philly

crshorizon: It doesn’t seem like it would be that tough to project supply for the demand. #SocPharm

ddwebster: @crshorizon: Thank you! Social Media has helped me meet people to help support me through recovery, roadbumps, return to normalcy #socpharm

MaverickNY: @EileenOBrien: glad I’m not at that HBA meeting – would give pharma and generic co’s stick on the drug shortages – unacceptable! #socpharm

CarolSchiller: @ddwebster: Sending positive wishes and prayers out for you! #socpharm

ddwebster: Welcome @CarolSchiller: @Maverick to #socpharm tweetchat. Good evening, ladies!

ddwebster: @CarolSchiller: Thank you! #socpharm

ddwebster: @MaverickNY: Do you believe this is an issue of profit margins winning over providing pts best treatment? Esp. peds w/leukemia #socpharm

EileenOBrien: But if only limited number of plants producing drug & 1 has quality issue then shortages result. Unfortunately happened w/ Fabry #SocPharm

CarolSchiller: @ddwebster: just hopping on to #socpharm What is today’s topic?

ddwebster: @CarolSchiller: T1: HCPs firing pts for refusal to receive vaccines T2: Drug shortages #socpharm

EileenOBrien: @MaverickNY: not sure exactly what or how #HBA panel will address drug shortages but it will be interesting I’m sure! #SocPharm

EileenOBrien: @MaverickNY: do you have ideas to remedy current shortages? Not my area. #SocPharm

ddwebster: T2: ties to T1 – b/cuz my immune system wiped out w/transplant, I will have to receive all my childhood vaccines again. No ? here #socpharm

ddwebster: RT @EileenOBrien: : @MaverickNY: do you have ideas to remedy current shortages? Not my area. #SocPharm

crshorizon: @ddwebster: Do you think a factor is limited capacity to produce multiple drugs simultaneously from one manufacturer? #SocPharm

ddwebster: @crshorizon: Good question. Manufacturer was based in OH, not familiar w/them. May have limited capacity, 1 issue shut them down #socpharm

EileenOBrien: Before going to South America in Aug I got more vaccines than I knew existed! Plus Malaria tablets, DEET & 50+ sunscreen. #socpharm

JackJFlorio: @HealthcareSMM – Thanks for Following Me – Jack #PHARMA #SOCPHARM #HCMKTG #HCSM #EPHARM #DIGPHARM

ddwebster: T3: Few minutes left…what do you all make of WellPoint removing branded Lipitor from their formulary? http://t.co/zxro9pUb #socpharm

ddwebster: T3: Few minutes left…what do you all make of WellPoint removing branded Lipitor from their formulary? http://t.co/T5RaBHpL #socpharm

ddwebster: T3: more PBMs moving from traditional 3-tier formularies to 4 or 5-tier formularies to pass med costs to pts #socpharm

EileenOBrien: @ddwebster: guess its all bout WellPoint trying to save some money #SocPharm

crshorizon: @ddwebster: Would be interesting to know criteria justifying ongoing coverage for Lipitor after patient tries generic. #SocPharm

MaverickNY: @ddwebster: @EileenOBrien: in the meantime, give the generic companies hell #socpharm

ddwebster: @crshorizon: my understanding is that they removed step therapy along w/branded Lipitor from the formulary. $$$ beat data #socpharm

ddwebster: T3: what recourse do patients have who’ve been on Lipitor for yrs & don’t see equal efficacy w/generic? #socpharm

MaverickNY: @ddwebster: @EileenOBrien: shhhh! Few understand that private but not academic oncologists get reimbursed for using cancer drugs #socpharm

ddwebster: @MaverickNY: @EileenOBrien: Shoot! Should have had my transplant at a private cancer center…except there is only 1 in Indiana #socpharm

EileenOBrien: Thats why I prefer nonprofit health insurance companies MT: @ddwebster: $$$ beat data #socpharm

ddwebster: RT @EileenOBrien: : Thats why I prefer nonprofit health insurance companies MT: @ddwebster: $$$ beat data #socpharm

MaverickNY: @ddwebster: @EileenOBrien: no, no, always pick the best academic centre! less bias, great care #socpharm

ddwebster: @MaverickNY: @EileenOBrien: Chose local (Indiana University) over Northwestern/Cleveland Clinic. No regrets, great care! #socpharm

EileenOBrien: @MaverickNY: what’s Stop RWA? I googled it & got Romance Writers of America… Assume that’s not it #SocPharm

MaverickNY: @ddwebster: @EileenOBrien: well done! Excellent choice #socpharm

ddwebster: Thank you all for joining the #socpharm tweet chat this evening and allowing me to moderate. Thanks to @EileenOBrien: for the opp #socpharm

soulflsepulcher: RT @EileenOBrien: : @MaverickNY: what’s Stop RWA? I googled it & got Romance Writers of America… Assume that’s not it #SocPharm

EileenOBrien: @MaverickNY: having worked for academic hc ctrs I prefer them as well #socpharm

EileenOBrien: Our time is up! Thanks so much @ddwebster: for raising such varied topics & leading #socpharm tonight.

ddwebster: @EileenOBrien: Thank you for allowing me the opportunity to moderate #socpharm this evening. Enjoy your week!

EileenOBrien: Hope to tweet you all next week – let me know if you have any #SocPharm topic ideas.

MaverickNY: @EileenOBrien: Stop RWA is Stop the Research Works Act HR3699 http://t.co/I0WxLTi2 #openscience #socpharm

EileenOBrien: @MDMonseau: thanks for agreeing to guest moderate #socpharm tonight!

MDMonseau: Welcome to the biopharma marketing & social media chat — #socpharm — I’m hosting tonight — Please introduce yourself!

FDALawyers: Hey all… #socpharm

DirectChoiceInc: #Healthcare #marketing firm from Philly. #socpharm

MDMonseau: We’ll assume that all tweets within #socpharm are your own and do not represent your employer or your clients (unless you say otherwise.)

FDALawyers: Hey all, attorney, pharmacist, entrepreneur from Philly here. #socpharm

MDMonseau: I have a bunch of topics that we could chat about, but thought we could kick it off with something that’s been in the news #socpharm

MDMonseau: Thought we’d kick this off with the news surrounding the Susan B. Komen foundation #socpharm

EileenOBrien: @chrisjcrichton @calabrese @PeteDTweets: & everyone else who enjoyed #epharma, continue convo during tweetchats Weds 8-9 pm ET at #socpharm

MDMonseau: Reminder: This is NOT meant to be a discussion of the allegations of “politics” – but an look at this as a social media crisis #socpharm

MDMonseau: @EileenOBrien: Thanks, Eileen! Yes — #epharma folks, please join into the #socpharm chat

MDMonseau: There’s a great synopsis about this on Social Media Today: check it out! #socpharm http://t.co/QGchqKJS

MDMonseau: Some key points I took from an examination of the crisis: 1) Planned Parenthood had been actively engaging supporters before this #socpharm

ddwebster: good evening, everyone on #socpharm tweet chat. Dana Webster of Avant Healthcare Mktg (opinions are my own)

MDMonseau: 2) Planned Parenthood broke the news of the Komen decision — encouraged the sharing of info with supporters #socpharm

MDMonseau: @ddwebster: Hey! Nice to meet you! #socpharm

FDALawyers: @ddwebster: Hey Dana #socpharm

MDMonseau: 3) Komen didn’t immediately respond through their channels. No response for TWO days. #socpharm

AnyOrdinaryGuy: #socpharm I think the crisis opened a pandora’s box – b4, you couldn’t say anything negative and now you can (in the open)

crshorizon: Hi – Chuck from Siren here. It’s surprising to think that SBKF didn’t anticipate the magnitude of the backlash. #SocPharm

MDMonseau: 4) Detractors used a post on Komen’s FB page that predated the news as a place to comment and express their anger. #socpharm

ddwebster: @MDMonseau: Nice to meet you as well! I have big shoes to fill for next week’s chat #socpharm

ddwebster: @FDALawyers: Good evening from Indy! #socpharm

PeteDTweets: #socpharm Checking out the twitter chat.

EileenOBrien: Tx for sharing that summary @MDMonseau: . But Komen has a huge social following too but their inconsistent message hurt them. #socpharm

MDMonseau: 6) Overall Komen messaging was defensive and inconsistent throughout. #socpharm

MDMonseau: What do you guys think? #socpharm

MDMonseau: @EileenOBrien: Agree, Eileen. I think their tardiness and lack of clear messaging was damaging #socpharm

TonyJewell: Re Komen, all good points by @MDMonseau: . Plus easier to rally ppl when you’re against something vs defending a decision/action #socpharm

MDMonseau: @EileenOBrien: AND they were not fast off the mark. That really hurt them. #socpharm

PeteDTweets: To me, the SBKF challenge could have been avoided with some simple PR war gaming. #socpharm

FDALawyers: @EileenOBrien: Messaging contributes towards a brand. But people have short online memories. Will msg be forgotten by next wk? #socpharm

EileenOBrien: PP prez credited Twitter & FB w/bringing message to mass media & helping to push Komen to change course: http://t.co/cNgVprWU #socpharm

MDMonseau: @AnyOrdinaryGuy: I think you raise an interesting thought — prior to this supporters didn’t think Komen could do anything wrong #socpharm

ddwebster: As a cancer survivor & participant in #bcsm tweet chat, I was amazed to see how advocates rallied together #socpharm

MDMonseau: @PeteDTweets: agree. Don’t think they prepared for backlash, but I also don’t think they had support in place to respond/engage #socpharm

ddwebster: To me, it shows that SBKF wasn’t engaged enough w/their audience, a big social media failure #socpharm

MDMonseau: @ddwebster: Tell us more about that experience with the rally #socpharm

ddwebster: @MDMonseau: advocates like @stales & @jodyms have vast personal networks that spread the word/voiced a collective opinion #socpharm

MDMonseau: @ddwebster: Interesting that at height of crisis, estimates that PP’s messages on FB at height reached 2.9 million, SBKF 56,680 #socpharm

DirectChoiceInc: #Healthcare is too much of a powder keg topic right now in general. It is so easy to find even the smallest pieces of information. #socpharm

CarolSchiller: @MDMonseau: Not exactly, I heard several cancer bloggers express doubt about Komen B4. This was just the icing on the cake 4. #socpharm

TonyJewell: With anything, you can fight, ride it out or fold. Best to decide what you’re prepared to do up front #socpharm

MDMonseau: @ddwebster: The prep that any organization should have — they should know how to reach people who can help spread messages #socpharm

ddwebster: @CarolSchiller: I agree. SBKF has had many missteps over past few yrs including suing other advocacy grps to TM “for the cure’ #socpharm

CarolSchiller: @ddwebster: Agree. If their antennae had been better, they might have known it was gong to be a disaster. #socpharm

EileenOBrien: Gr8 article from Dell employee: Komen silver lining is listen & learn from sm audience in future http://t.co/oC7RARFz #socpharm

PeteDTweets: @MDMonseau: #socpharm which would’ve been exposed with PR war gaming. PR and social must be closely tied (Social is more PR than mktg)

ddwebster: @MDMonseau: Exactly! @AndrewSpong has a new site that shows the #bcsm tweet chat (and #socpharm) is one of most active for health issues

MDMonseau: @ddwebster: their trademark suits were the game changer for me in terms of my impressions of the org. #socpharm

PracticalWisdom: RT @ddwebster: : @MDMonseau: Exactly! @AndrewSpong has a new site that shows the #bcsm tweet chat (and #socpharm) is one of most active for …

CarolSchiller: @ddwebster: they also failed to address/understand the pink backlash. Terms like “pinktastic” “craptastic” hurt their credibility #socpharm

MDMonseau: @EileenOBrien: gr8 share, Eileen. And Dell should know. Their crisis gave rise to their GR8 listening/service model #socpharm

ddwebster: @MDMonseau: @EileenOBrien: Mine as well. As a 2 time lymphoma survivor, it’s hard to see focus shift from advocacy #socpharm

crshorizon: Any advice for immediate next steps for SBKF to salvage what they can & move forward? #SocPharm

ddwebster: @CarolSchiller: I would recommend searching #bcsm The commentary the past two days has been really interesting #socpharm

MDMonseau: Question for folks — what should SBKF (or any org.) do going forward to prevent a repeat performance??? #socpharm

hbrofman: hi guys, just popped in. As a supporter of komen, I’ve gotten in2 it w them b4 ovr poorly executed campaigns. (more) #socpharm

MDMonseau: RT @crshorizon: : Any advice for immediate next steps for SBKF to salvage what they can & move forward? #SocPharm

DirectChoiceInc: For advice, they need positive buzz, but it can’t seem like they are pandering. #socpharm

donschindler: Hey Dana. Great to hear you. Do you think that companies will shy from PP after seeing what happened? They could never stop. #socpharm

hbrofman: (cont) while different, it’s similar b/c they don’t understand the responsibilities expected in a world of #sm & 1to1 mktg tools #socpharm

ddwebster: @MDMonseau: SBKF needs to make-up w/vocal advocates in breast cancer. Admit they goofed/bring advocates in as consultants #socpharm

MDMonseau: @hbrofman: Do you have specifics? #socpharm

EileenOBrien: @ddwebster: I didn’t even know there was a #bcsm chat. Can you share link to @andrewsprong’s site? Is it Symplur? #socpharm

AnyOrdinaryGuy: #socpharm They could get big name star power supporters to tweet /blog about all of the good work they do

vivekaliraman: Increase funding for research substantially @MDMonseau: : what should SBKF do going forward? #socpharm

MDMonseau: RT @vivekaliraman: : Increase funding for research substantially @MDMonseau: : what should SBKF do going forward? #socpharm

EileenOBrien: @donschindler IMHO if individual grants were denied or Komen chapters made funding decisions re PP that would’ve been accepted. #socpharm

ddwebster: @EileenOBrien: #bcsm is Mon at 9pm ET. Yes, it’s Symplur. Here’s the link to their health tweetchat calendar http://t.co/vRhc5ZJs #socpharm

AnyOrdinaryGuy: #socpharm Bonus points if that person is also a known PP supporter

CarolSchiller: @MDMonseau: This post by @tdefren on what Komen could have done better is excellent http://t.co/z5T7j4ug #socpharm

crshorizon: @ddwebster: I agree that acknowledging their mistake would be a good first step along with recapping some of their major successes. #SocPharm

MDMonseau: @CarolSchiller: Thanks @tdefren, if you are out there, jump in!!! #socpharm

ddwebster: @crshorizon: Perhaps they could pull vocal advocates/foes in for a summit, broadcast/blog/tweet & LISTEN to what supporters want #socpharm

hbrofman: @MDMonseau: when employing 1to1 mktg, you (via the tools) must tune the pathway based on the response & {repeat}. (more) #socpharm

EileenOBrien: @CarolSchiller: Tx for sharing. Looks like the Yoplait sm team knew how to engage w/their community. #socpharm

CarolSchiller: @crshorizon: First Komen must decide what they really stand for. The right PR remedy will stem from that. #socpharm

ddwebster: RT @CarolSchiller: : @crshorizon: First Komen must decide what they really stand for. The right PR remedy will stem from that. #socpharm

hbrofman: @MDMonseau: (cont) you must test messaging 4appropriateness &relevance. not doing so comes off as a lack of caring or disconnected #socpharm

EileenOBrien: @ddwebster: gr8 idea. Say we heard your frustration, we want to learn more, let’s engage in dialogue & take action as result. #socpharm

EileenOBrien: RT @CarolSchiller: : @crshorizon: First Komen must decide what they really stand for. The right PR remedy will stem from that. #socpharm

vivekaliraman: SBKF shud go back 2 their roots MT @CarolSchiller: @crshorizon: First Komen must decide what they really stand for #socpharm

ddwebster: @EileenOBrien: Exactly! Hold a summit, broadcast over many channels, listen and dialogue #socpharm

EileenOBrien: @hbrofman: So they wanted to use sm as a push medium & not engage? #socpharm

AnyOrdinaryGuy: @CarolSchiller: @crshorizon: #socpharm great insight – they need to redefine (or define) their mission

MDMonseau: @hbrofman: Excellent. Thnking ’bout Dell & this reminds me of the need for listening/command center to track conv. & shape messages #socpharm

MaverickNY: I think the Komen brand has taken a real dent on its credibility, string of bad decisions, not enough $ into research #socpharm

CarolSchiller: Brands must remember: social media only amplifies who you really are. If you’re in it 4 the spin, you don’t get it #socpharm

EileenOBrien: @ddwebster: But they’d actually have to be open to doing something with that feedback… And that’s scary for most companies. #socpharm

ddwebster: RT @EileenOBrien: : @ddwebster: But they’d actually have to be open to doing something w/feedback…that’s scary for most companies. #socpharm

hbrofman: @MDMonseau: if not doing this, it’s a failure & ppl r upset or worse, walk away. depends on how ‘invested’ they r in brand/cause. #socpharm

ddwebster: RT @MaverickNY: : I think Komen brand has taken a real dent on its credibility, string of bad decisions, not enough $ into research #socpharm

ddwebster: @MaverickNY: Good evening, Sally! #socpharm

AnyOrdinaryGuy: “@CarolSchiller: :Brands must remember:social media only amplifies who you really are….#socpharm” so true!

Gigi_Peterkin: arg! finally made it to #socpharm – darn trains! catching up on all the tweet chat goodness

hbrofman: @MDMonseau: take that kind of failure with detached understanding of followers, add #sm & boom- 1 failed event amplifies into… #socpharm

ritters90: @MaverickNY: Hey Sally…I agree… #socpharm

MaverickNY: @ddwebster: yo Dana! Glad to find another fan of #bcsm and @jodyms @stales work #socpharm

crshorizon: @EileenOBrien: Good point – but diving in & really changing/improving will be a critical deciding factor for many. #SocPharm

ritters90: Just checking in..been a long day so catching up. Wow you guys are smart ! #socpharm

ddwebster: I’m a BIG fan! RT @MaverickNY: : @ddwebster: yo Dana! Glad to find another fan of #bcsm & @jodyms @stales work #socpharm

MDMonseau: This brings me to topic #2 which is key to all of this — building a command center to track conversations and shape messages #socpharm

hbrofman: @EileenOBrien: I believe they r a classic case of a brand not enaged/responsive to the data captured by the tools they use #socpharm

ritters90: @MDMonseau: Agree, have you seen Dell’s or Coke’s or the NFL command center. But it takes a lot of money Marc #2 #socpharm

CarolSchiller: @EileenOBrien: @ddwebster: Shame that now they have to spend a bunch of $$ fixing a self-inflicted wound instead of on research. #socpharm

MDMonseau: Lots of examples out there in CPG space (Gatorade, for one http://t.co/UhuFrV3L) What’s possible in pharmaland? #socpharm

Gigi_Peterkin: @ritters90: hey you! nice to see you here. #socpharm is a great chat – thanks to @EileenOBrien: and her fab moderators

hbrofman: Yes! RT @CarolSchiller: Brands must remember: social media only amplifies who u really r. If ur in it 4 the spin, u don’t get it #socpharm

Gigi_Peterkin: @MDMonseau: <3 idea of a command center. struggle with how to get pharma to see value. think CPGs would go for it in a heartbeat. #socpharm

ritters90: @Gigi_Peterkin: Hey there..Yeah I am just catching up on emails and saw a note from Monseau… in the 650 un read emails #socpharm

MDMonseau: And do you brilliant folks have of such centers in the pharma space? T2 #socpharm

Gigi_Peterkin: @MDMonseau: the most we did at AZ was to aggregate our corporate SM channels on one page of the website and stream the feeds. #socpharm T2

ddwebster: RT @Gigi_Peterkin: : @MDMonseau: Love idea of a command center. struggle with how to get pharma to see value #socpharm

ritters90: @MDMonseau: Cant even get Pharma folsk to take lisetneing and monitoring seriously – would love to know if anyone has one #socpharm

Gigi_Peterkin: @MDMonseau: the soc med “curator” was the last thing I did before I left AZ – and IMO the biggest value add. T2 #socpharm

MDMonseau: Agree with @hbrofman: , @CarolSchiller: — SM is about demonstrating consistent BEHAVIORS not telling people about WHO you are #socpharm.

ritters90: @Gigi_Peterkin: seems to be the same in most places I have visited #socpharm

hbrofman: @CarolSchiller: I hope that made sense #socpharm

MaverickNY: RT @ritters90: : @MDMonseau: Agree, have you seen Dell’s or Coke’s or the NFL command center. But it takes a lot of money Marc #2 #socpharm

MDMonseau: Effect command centers require a pathway to content creation and distribution as well as 24-7 monitoring #socpharm

MDMonseau: Effect command centers require a pathway to content creation and distribution as well as 24-7 monitoring #socpharm

MDMonseau: Previous tweet should say “effective” not “effect” heh. #socpharm

CarolSchiller: @ritters90: @MDMonseau: Some brands mistake a $$ command ctr for the real work of using insights to influence strategy. #socpharm

hbrofman: @CarolSchiller: same tru 4 1to1 marketing, xcept while event failures r individual, no less costly due2 directed amplification #socpharm

Gigi_Peterkin: how would you selll a client or the C-Suite in pharma on the command center approach? #socpharm

ritters90: @MDMonseau: Well until marketing and Comms can justify cost, major issue. Corporate Finance folks do not see value #socpharm

ritters90: @CarolSchiller: AND the dreaded “AE” rears it’s ugly head…if we monitor we may hear tings we dont want to #socpharm

soulflsepulcher: RT @MaverickNY: I think the Komen brand has taken a real dent on its credibility,string of bad decisions,not enough $ into research #socpharm

CarolSchiller: @MDMonseau: Exactly. Monitoring is just step 1. It’s what you do with it that counts. #socpharm

MDMonseau: @CarolSchiller: Agree. Data gathered has to be tied into strategy — message shaping, content creation/distribution, outreach #socpharm

EileenOBrien: @CarolSchiller: Completely. I like to say “pure data is pure torture” – tell me what recommendations you have from the data. #socpharm

MDMonseau: @ritters90: I don’t think the AE thing should detract. If companies are REALLY about health, we should be seeking AEs #socpharm

Gigi_Peterkin: @ritters90: how many of those AEs are reportable?if they are,follow process.we need to move clients off AE fear IMO #socpharm @CarolSchiller:

ritters90: You have to see what IBM and Watson are doing with Big data. Spent the day with them this week…AWESOMENESS… #socpharm

ddwebster: Pharma has seemed disinterested in really knowing what customers (HCPs & pts) are really saying about their brands via soc media #socpharm

ritters90: @Gigi_Peterkin: I agree about AE and reporting, but I hear over and over 2 things 1. no resources and 2,. what if #socpharm

CarolSchiller: @hbrofman: Individual mistakes are easily forgiven. Confusing ppl about what you stand for is much harder to recover. #socpharm

MDMonseau: cont. seeking reported experiences of our products to understand the impact they are having #socpharm

hbrofman: @Gigi_Peterkin: I think 1st thng is 2 mk sure they understand what it does, what cn b measured & 2days expected resultant pathways #socpharm

Gigi_Peterkin: @ddwebster: I don’t know if they are disinterested as much as they are afraid/unsure if they are resourced to stay compliant #socpharm

ddwebster: @ritters90: I don’t think the AE thing should detract. If companies are REALLY about health, we should be seeking AEs #socpharm

hbrofman: RT @CarolSchiller: : @MDMonseau: Exactly. Monitoring is just step 1. It’s what you do with it that counts. #socpharm

MDMonseau: @ritters90: Sounds VERY cool. Do tell more… #socpharm

ritters90: @Gigi_Peterkin: totally agree with the afraid/unsure…but also resrouce issues most folks have 1 person doing 10 things already #socpharm

EileenOBrien: @ddwebster: In my experience, smaller brands & companies are interested in sm insights – cost effective way to get market research. #socpharm

Gigi_Peterkin: @ritters90: when are you sharing the Watson/IBM info? you need to blog man! or FB it. or tweet it. or… #socpharm

ddwebster: @Gigi_Peterkin: some ppl I have spoken w/have completely dismissed it, esp because of AEs. Disclosure: small sample size #socpharm

hbrofman: Yes, b/c #sm users have expectations. @CarolSchiller: : @MDMonseau: Exactly. Monitoring just step 1. It’s what u do w it th@ counts. #socpharm

HealthcareSMM: MT @MDMonseau: @hbrofman: @CarolSchiller: SM: demonstrating consistent BEHAVIORS not telling people about WHO u r #socpharm

vivekaliraman: Other challenge with pharma – how do you change product profile quickly based on SM feedback? MT @MDMonseau: @ritters90: #socpharm

Gigi_Peterkin: @ritters90: true. but there’s a call center devoted to AE reports. it’s more fear than reality. biggest hurdle I cleared at AZ #socpharm

CarolSchiller: @Gigi_Peterkin: @ritters90: Use the Komen fiasco. Lay out real cost to them in $$. Demo cost/benefit for ur org in that context. #socpharm

ritters90: @Gigi_Peterkin: I have to say, it was awesome…so this is what started it all for IBM http://t.co/FjxFTkEU #socpharm

Gigi_Peterkin: @ddwebster: I worked w/really passionate brand mgrs. who were interested but afraid. deer in headlights. #socpharm

MarianCutlerSpot on // RT @MaverickNY: Komen brand has taken dent on its credibility, string of bad decisions, not enough $ into research #socpharm

ritters90: @Gigi_Peterkin: Blog needs time…a precious commodity for me at the moment – ask Monseau ;O) #socpharm

ddwebster: @Gigi_Peterkin: I think corporate culture has a lot to do w/it. Saw it in the field as a rep, too #socpharm

EileenOBrien: Time is up! Thanks so much to @MDMonseau: for guest moderating a gre8 #socpharm chat. See u next week

Gigi_Peterkin: @ritters90: ha! don;t I know it re: blog (just have to look in the mirror on that one) cc: @MDMonseau: #socpharm

CarolSchiller: Yep. RT @EileenOBrien: : @ddwebster: smaller companies are interested in sm insights – cost effective way to get market research. #socpharm

ritters90: Pharma has 50 year old processes and 80 year old laws… change of behavior and processes is slow…Social has 5 year old process #socpharm

hbrofman: @MDMonseau: @CarolSchiller: a skillset already supposedly learned w 1to1 marketing tactics; evolved for #sm domain. #socpharm

CarolSchiller: RT @MDMonseau: : Agree with @hbrofman: ,- SM is about demonstrating consistent BEHAVIORS not telling people about WHO you are #socpharm.

MDMonseau: At the end of the day, I think it will take a crisis to convince the need for command centers in pharm #socpharm

ritters90: @Gigi_Peterkin: Yes, but how can you get the call center person to connect to social process… #socpharm

EileenOBrien: I’ll post link to transcript tomorrow. Thanks again @MDMonseau: & hope you can all join us on another #socpharm chat

CarolSchiller: @Gigi_Peterkin: did you blog about that? I’d love to read more about your experience overcoming AE fears. Link please! #socpharm

ritters90: Do folks remember the Sanofi Facebook debacle – that was a crisi, Sanofi came out stronger and adapted, but only just/slightly #socpharm

MDMonseau: Thanks everyone! Had a great time. I hope you all enjoyed it and got something out of the conversation! TTYL #socpharm

Gigi_Peterkin: @CarolSchiller: you know I never did. it was a bit closed door when I was there. could do now though. #socpharm

ritters90: @MDMonseau: Tahanks Marc..sorry I was late. Looks like I missed a cool sesison…have a good night Y’all #socpharm

hbrofman: @MDMonseau: @ritters90: yes the benefits of the medium should outweigh the monitoring fear 4 AE’s. Just do it. Some pharma’s r. #socpharm

hbrofman: I’m jealous @ritters90: : You have 2c what IBM and Watson r doing w Big data. Spent the day with them this week…AWESOMENESS… #socpharm

CarolSchiller: @EileenOBrien: @MDMonseau: Thanks for this chat. So glad I could finally make it. Great discussion. #socpharm

ritters90: @hbrofman: I’ll try and get a piece done on it…IBM is really visionary about all this. Predicting watson to be a $6B business #socpharm

hbrofman: @ritters90: @Gigi_Peterkin: I have heard of at least 1 company that supplemented w outsource monitoring co 2 solve that problem #socpharm

EileenOBrien: @CarolSchiller: Thanks for sharing your insights! #socpharm

ritters90: @hbrofman: I know of a few who outsource monitoring offshore….but its very news focused not SM Listening and Monitoring #socpharm

Gigi_Peterkin: @hbrofman: outside monitoring co makes totalk sense. may be hard to sell in this economic enviro thoughts @ritters90: ? #socpharm

MDMonseau: @ritters90: Glad you could join in! #socpharm Have a good one!

ritters90: Thanks everyone…have to go back to emails and work…had a great time…carry on ! #socpharm

hbrofman: @EileenOBrien: @MDMonseau: @ddwebster: glad I was able to stop by 2night. Hope to talk to everyone in #socpharm again soon!

ddwebster: @hbrofman: Pleasure to meet you! Hope you’ll be part of the conversation again next week. #socpharm

CarolSchiller: Very true my friend. RT @hbrofman: : same mistake w many individuals=many mistakes. “I’m sorry” only good til next failed msg. #socpharm

GlenGilmoreKomen’s “Trial by Social Media” http://t.co/G8B57c1o MT @EileenOBrien: #crisispr #socpharm

AnitaMedia: Interesting chat tonight via @MeredithGould @EileenOBrien: : Komen Foundation: what worked, what didn’t 8pm #socpharm chat #epharma

MDMonseau: ALMOST FORGOT — Social Media Week is next week AND there is a health & wellness track. Please join us! http://t.co/b8dQBv6T #socpharm

hbrofman: @ddwebster: thx. You too. While it’s been a while I hope to stop by more frequently, content of #socpharm chat always fresh and relevant.

MDMonseau: Part of SM Week I’m helping with a session to “crowdsource” a response to FDA draft doc that came out in Dec. #socpharm http://t.co/iaUk3qNs

MDMonseau: @glengilmore Thanks for joining us, Glen! #socpharm

ritters90: @Gigi_Peterkin: @MDMonseau: Pretty good post of IBM Watson and Healthcare: http://t.co/pCuRpiY8 #socpharm

All the presenters were excellent, but I’m going to recap the regulatory focused presentations and the changes announced by a Facebook representative.

Mark Gaydos, Vice President, U.S. Regulatory Affairs Marketed Products at Sanofi, started off the sessions by sharing how Sanofi has been able to embrace social media. It’s especially admirable that Sanofi, which took a beating early on via social media, is using the space to have two-way conversations.

I’ve praised Sanofi’s social media work before, in particular, their efforts with the March of Dimes on the Sounds of Pertussis education campaign, including a Facebook page where an engaged community interacts. Gaydos discussed Sanofi’s social media cross-functional social media task force, which develops guardrails and trains employees. He noted that transparency is key when engaging in social media. He said there are employees identified to represent Sanofi via social media in a non-promotional way with no need for pre-approval. I’m assuming an example of this is the community manager, Laura Kolodjeski, who does a great job with their diabetes blog and Facebook page. She responds to posts appropriately and lets her warm personality shine through.

Recent FDA guidance
Gaydos also mentioned December’s FDA guidance on unsolicited off-label requests. When a question was asked about responding to on-label questions, Gaydos felt that the FDA did not need to provide guidance on this because it was already in place. He said unsolicited on-label questions in public forums could be addressed publicly following all existing guidelines.

David Ralston, Senior Director, Business Conduct at Gilead, also reviewed this “holiday surprise” guidance. He said that if a company could address public unsolicited off-label comments with on-label information in that public forum, then “go for it.” Ralston also provided a great example of what could be possible by sharing an example of some Australian guidance.

Peter Pitts, a former FDA official now at the Center for Medicine in the Public Interest, shared many of the points from this Medical Marketing & Media article. In summary, he felt it was the FDA saying basically “use your best judgment.”

More changes coming to Facebook
“Connections aren’t worth anything unless people are engaging,” explained John Patten from Facebook. He reminded the audience that there’s more to Facebook than pages, including ads, polls, apps and plug-ins. He announced that Facebook is rolling out the timeline format to brand pages on February 29, 2012. Patten assured the room that brands would have several months to move to the timeline format before it became mandatory. Patten also said that Facebook will launch a new feature that will allow brand page admins the ability to private message individuals who have potential adverse events.

In summary, I’ll quote Mary Ann Belliveau from Google who said, “Social media allows pharma to make real relationship with real people.” I agree.

(Image courtesy of Alan Turkus on Flickr).

Google+
Google started allowing businesses to create Google+ pages/profiles and visitors to opt into specific “circles” in order to receive specific posts and updates. An example might be using circles to customize messages for patients, healthcare providers and caregivers. The Google+ platform could integrate well with a segmented marketing strategy, and Google+ now has a network of 100 million users worldwide.

However, one reason for pharma to wait to create Google+ pages is because the commenting capability cannot be suppressed or controlled the way it can be on YouTube. Note that just like Facebook (850 million users), a Google+ page requires resources to add content, monitor comments and interact with users. Roche is the only biopharmaceutical company we have seen who has taken advantage of Google+ with placeholder company and career pages.

Recently there has also been an integration of Google+ content into search engine results pages. When Google users are logged in and search, they get search results that are personalized based on their history and can also be optionally personalized based on who they are following with their Google+ account. These personalized results are both linked at the top and integrated among the regular results. See this in the example below which Google calls “Search, Plus Your World” (SPYW). My thought is that this is a test to see if people trust their friends/contacts more than Google’s own algorithm and to test more social search functionality.

New Search Algorithm Changes
Google has started publishing changes to their search engine algorithm on a monthly basis on the Google Blog in an effort to be more transparent about how they are fighting spam and sites that game the search results. There was considerable reaction to the Panda/Farmer Updates to the algorithm in 2011 when many sites had a significant drop in traffic within days of the change. Understanding what Google looks for in a high-quality site is always evolving as they find more sophisticated ways to configure their calculations and take more information into account in making that decision. At Siren we’ve been keeping up with these changes, and they have not negatively impacted traffic to client sites at all. Some expected Google changes have to do with using more social and human interaction factors to indicate high-quality sites, since just calculating how many links point to a site provided loopholes where companies could manipulate SEO in ways that people didn’t really find matched their expectations for search results. Google has also noted that they have begun to look at site load times and the ad placement on landing pages as part of their algorithm calculations.

Google Advertising Opportunities
Google has offered display advertising opportunities across their content network of publisher partners for years and yet many people still overlook the Google Display Network (GDN) and banners as an important part of an integrated digital strategy. The GDN has many healthcare-specific network partners to target for ads. Banner advertising has been getting more useful for pharmaceutical companies as scrollable risk information was made possible with Flash-based ads and the trackability from impression through to conversion has improved. Adding banner ads to a campaign has been proven to lift paid search and direct traffic as well.

Mobile ads are another growth area for Google since the number of mobile searches more than doubled in 2011. The number of smartphones keeps increasing, and this brings Google along with you everywhere you go. In healthcare marketing this means that patients can look up health information as soon as they have a question and healthcare providers can look up reference information whenever and wherever they need it. It is important to see if your site is mobile optimized on Apple/Android/Windows smartphones before launching these ads. Creating paid search or display mobile campaigns should be a part of an integrated digital strategy in 2012.

It is clear that Google is determined to stay both relevant for business and connected to people’s social lives in the next year. Our hope is that we can help our clients use these tools to positively influence both patient health and our client business success.

(Image courtesy of Fabrizio Van Marciano on Flickr).

ddwebster: Hello, #socpharm – Dana Webster from Avant Healthcare Mktg (opinions are my own)

vivekaliraman: Hola @EileenOBrien: : Welcome to the #socpharm tweetchat. For the next hour we’ll be talking biopharma marketing & sm. Say hello!

EileenOBrien: We’ll assume your tweets reflect your own opinion, not your employers or clients. They are not legal or health advice! #socpharm

lsk204: Hi #socpharm ers!

EileenOBrien: Do we want to talk google privacy first or FDA labeling guidance? #socpharm

ddwebster: I’m game for either topic #socpharm

EllenHoenig: @EileenOBrien: hello #socpharm

EileenOBrien: T1: Does Google’s new privacy policy: http://t.co/S9djLelE take them closer to being Big Brother? #socpharm

EileenOBrien: Welcome back friend! RT @ellenhoenig: hello #socpharm

EileenOBrien: T1: If you don’t like Google’s terms you are always free to choose to use other services. #socpharm

mikecapaldi: The latter RT @EileenOBrien: Do we want to talk google privacy first or FDA labeling guidance? #socpharm

EileenOBrien: @mikecapaldi: Welcome! We’ll get to FDA in a few minutes, sorry we already started on google! #socpharm

ddwebster: Agree with @EileenOBrien: – I do not feel my privacy is compromised and accept their terms (disclosure: Android user) #socpharm

ddwebster: Clarification: agree that I have the option to go elsewhere #socpharm

lsk204: @eileenobrien agreed “If you don’t like Google’s terms you are always free to choose to use other services.” #socpharm

EllenHoenig: @EileenOBrien: they have so many services, it will increasingly be diff to keep track of how personal & behavioral data being used #socpharm

EllenHoenig: @EileenOBrien: they have so many services, it will increasingly be diff to keep track of how personal & behavioral data being used #socpharm

JanetLSameh: Yes but Google/Android everywhere MT @eileenobrien: T1: If you don’t like Google you are always free to choose to use others. #socpharm

EileenOBrien: No comments on Google? Do people generally feel decreased privacy is price we are willing to pay for free services? #socpharm

EileenOBrien: @eileenobrien Sorry big time delay! #socpharm

JanetLSameh: Janet from Chicago joining late. Healthcare call center background including patient adherence and clinical trials. #socpharm

JanetLSameh: T1: No decreased privacy is the price we pay for using the easy default #socpharm

EileenOBrien: T1: More concerning to me was high inclusion of Google+ streams in organic search results http://t.co/mhVGRZRZ #socpharm

ddwebster: T1: yet to find the benefit of Google+ other than influence on Google Analytics moving forward #socpharm

lsk204: #socpharm T1 @EileenOBrien: Agreed, I don’t think Google+ results should go on Google, at least not without an “opt out” feature like fb has

EileenOBrien: T2: FDA guidance on brand/generic names – mentions “computer-based” ads. Big change? http://t.co/EaRi7C7D #socpharm

friedah03: Hi there! Frieda Hernandez joining #socpharm late, will have to catch up.

EllenHoenig: @EileenOBrien: T1: i too find it concerning bec means search results may become skewed,

EileenOBrien: T2: Per FDA even w/header, logo, ect using generic has to b in “running” text too. Review of most big brand sites, not the case #socpharm

EllenHoenig: @EileenOBrien: T2: seems 2be going against consumer friendly language-complicated generic names r not easy or 5th gr reading level #socpharm

EileenOBrien: BTW, does everyone know every time someone mentions FDA during #socpharm chat we have to sip our drink? Mine is water tonight

lsk204: #socpharm T2: also a lot of ambiguity there. Would be nice if guidance was more clear-cut

EileenOBrien: @lsk204: Agree. Use of the word “screen” is confusing. Screen size of iphone, ipad, laptop & monitor r all vastly different #socpharm

lsk204: #socpharm T2: but that’s nothing new for the #FDA… like @EileenOBrien: ‘s “drinking” game lol

ddwebster: @EileenOBrien: Mine is water, too….still lots of work to to this evening #socpharm

JanetLSameh: #FDA and clear-cut are rarely used in the same sentence. I think lawyers have something to do with that #socpharm

ddwebster: RT @JanetLSameh: : #FDA and clear-cut are rarely used in the same sentence. I think lawyers have something to do with that #socpharm

friedah03: Agreed. RT @ddwebster: : T1: yet to find the benefit of Google+ other than influence on Google Analytics moving forward #socpharm

EileenOBrien: Has everyone said all they have to about latest FDA guidelines? Think I’ll create a generic name for myself #socpharm

JanetLSameh: And mobile aps different as well MT @eileenobrien: @lsk204: Agree. Screen size of iphone, ipad, laptop & monitor r not the same #socpharm

friedah03: LOL! Maybe crowdsource it re: create a generic name for myself @EileenOBrien: #socpharm

EileenOBrien: Speaking of mobile. T3: Brands Continue Limited Mobile Site Offerings http://t.co/zSrt0ngr Why do you think that is? #socpharm

EileenOBrien: No I’d be afraid of result! RT @friedah03: : LOL! Maybe crowdsource it re: create a generic name for myself @EileenOBrien: #socpharm

richmeyer: Drug companies spent $516 million lobbying in 3009/2010 #hcsm #socpharm #mHealth #epharma #hcmktg #fdasm #pharmamktg

JanetLSameh: T3: Mobile versions of websites always stripped down versions of desktop. Not sure if because small screen or lack of power #socpharm

EileenOBrien: T3: For some clients it comes down to prioritizing resources & mobile sites haven’t made it to top of list yet. Getting there. #socpharm

lsk204: #socpharm T3: agree with @EileenOBrien: but I think this should be a priority, even over ::gasp:: social media. mobile=more pervasive

JanetLSameh: T3: Problem with #pharma and mobile sites is how would you display fair balance info? (not a programmer nor play one on TV). #socpharm

EileenOBrien: T3: My fav stat, ironically frm Google, is 24% of all prescription searches in 2011 are estimated to come from mobile devices. #socpharm

ddwebster: T3: as a pt, I am interested in apps that manage my disease but not so much product specific #socpharm

EileenOBrien: @lsk204: True, mobile ppc or sites aren’t as sexy as FB or Google+! Probably more effective but not as hott!! #socpharm

EileenOBrien: @janetlsameh LOL. Yes, the talented geeks can work that out. #socpharm

EllenHoenig: RT @EileenOBrien: : T3: My fav stat, ironically frm Google, 24% of all Rx searches in 2011 are est. to come from mobile devices. #socpharm

friedah03: gd insight. RT @ddwebster: : T3: as a pt, i’m interested in apps that manage my disease but not so much product specific #socpharm #epatient

EileenOBrien: Any final thoughts in last few minutes? Anyone read any good books or articles they’d like to share? Or speaking gigs? #socpharm

EileenOBrien: Next week @MDMonseau will be guest moderating and then on Feb 15 will be @ddwebster: . Hope to see you all then. #socpharm

JanetLSameh: Speaking of mobile RT @haleadvice: Takeaways From BDI’s Mobile Healthcare Comms Conference http://t.co/0LSSEXll #socpharm

EileenOBrien: @fdalawyers You are a busy man. Do you have a list of all your speaking engagements? #socpharm

lsk204: Thanks for a great chat #socpharm ers see you next week!

EileenOBrien: Tx for sharing MT @janetlsameh: Speaking of mobile RT @HaleAdvice: Takeaways From BDI’s Mobile HC Comms Conf fhttp://bit.ly/xFESet #socpharm

EileenOBrien: Have a great night & thanks everyone for joining in. I’ll post the transcript tomorrow. #socpharm

friedah03: @sirenwendy to speak at the Economist #pharmasummit in London on 2/9, “Putting Patients at the Centre” #socpharm #raredisease #patient #s4pm

FDALawyers: @eileenobrien Sorry I couldnt get on today. Am still at work, but I hate missing #socpharm

JanetLSameh: Nite all and thanks! MT @eileenobrien: Have a great night & thanks everyone for joining in. I’ll post the transcript tomorrow. #socpharm

friedah03: Good nite #socpharm peeps! Another great chat thanks to @EileenOBrien: and all who participated.

friedah03: @FDALawyers I hear you, Darshan! I’m still at work too. We missed you on #socpharm, now back to the salt mines

Due to the nature of the condition, a patient diagnosed with any one of the more than 7,000 rare diseases and disorders is part of a niche population on the margin of medicine. Their treatments establish the border — the edge of the latest medical advancements resulting from significant financial investment, targeted research and relentless patient advocacy.

New rare diseases are discovered every year. Most are inherited and caused by genes mutations. Others are the result of environmental and toxic conditions. All that has been or will be achieved in the advancement of rare disease therapies started with an impassioned force of patient advocates focused on an urgent mission. Their collective voice pushes government, business and science to a common ground that provides the platform for innovation at the margins.

30 days before Rare Disease Day
These are some of the reasons why increasing awareness and education around rare disorders is so important, and why Siren Interactive supports Rare Disease Day. Each year, Rare Disease Day is celebrated on the last day of February. This year, a leap year, Rare Disease day is February 29 – a rare day itself.

Today, 30 days before Rare Disease Day, we’re using this blog to participate in the Children’s Rare Disease Network Rare Blog Hop. Check out some of the other posts below. Here are some ways you can take action:

1. Help unite 1 Million for RARE on the Global Genes Project Facebook page so that we can increase awareness of the rare disease community
2. Wear That You Care (using jeans to call attention to genes that can cause rare disease) on Rare Disease Day and encourage others to do so.
3. Donate a bracelet to the 7000 Bracelets for Hope campaign and bring hope to a child/family living with rare.
4. Are you living with rare? Sign up to receive one of the 7000 Bracelets for Hope and also join the R.A.R.E Network.

On February 29, we look forward to celebrating all the progress that has been made in rare diseases in the past year.

Reliance on pharma-sponsored digital resources among online U.S. adults is significant. The research found “51% of online U.S. adults (ages 18+) use pharma-sponsored digital resources, such as condition and treatment information, disease management tools, doctor discussion guides, or mobile apps or websites.” This validates that the interactive information and tools produced by biopharma are being utilized and appreciated.

For patients with a chronic condition, the reliance on pharma-sponsored digital resources was even greater. The study learned 75% of angina patients and 68% of rheumatoid arthritis patients take advantage of these interactive materials. These findings support Siren’s 11-year experience working with rare disease patients. For many rare diseases there’s a lack of comprehensive information and support tools. Often this need is filled by biopharma companies, and the materials are highly valued and utilized by rare disease patients – and physicians.

I asked Maureen Malloy, Senior Healthcare Analyst at Manhattan Research, if there were particular resources that were used more than others. “Basic condition and treatment information was the most popular,” said Malloy. “There was little interest in contests and games. The respondents wanted practical resources from pharma such as condition management support and ways to help them talk to their doctor more than what they saw as entertainment.”

Resources get patients talking
Use of these materials results in action: a conversation about a prescription drug. The study learned “43% of consumers using pharma-sponsored digital resources have discussed prescription drugs with a doctor, nurse, or pharmacist as a result.” This data point supports the business objective behind providing these interactive resources: generating a conversation with a healthcare professional. Note that the study was fielded online among 6,634 U.S. adults, ages 18+ during Q4 2011.

For comparison, Prevention magazine’s Direct to Consumer Study 2011 found that as a result of seeing an advertisement – not necessarily online – 77% of survey respondents talked to a doctor and 23% asked for a prescription.

The opportunities
Manhattan Research found that one of the highest unmet demands was for doctor discussion guides. “The text versions are helpful, but there is an opportunity for pharma to provide more interactive and creative versions to help facilitate these conversations,” Malloy noted. “There is also a demand for support tools to help manage conditions on an ongoing basis.”

Patients want pharma in social media, too
Forty-two percent of online adults agreed that pharmaceutical companies should be involved in online health communities for consumers. Only 19% disagreed, with 39% being impartial. This data supports Prevention magazine’s findings that 46% would be very or somewhat interested in reading comments and posts from pharmaceutical companies. Malloy told me that Manhattan Research did not ask respondents how pharma should be involved in online health communities, but that they plan to delve deeper next year.

When asked about pharma interaction on more “public” social networks, such as Facebook or Twitter, the respondents were not as receptive. “Even younger consumers weren’t very interested in having pharma answer their questions on Twitter or Facebook,” said Malloy. “However, it’s important to note that interest in pharma involvement is significantly higher among certain condition groups.”

Below are the top patient and caregiver groups to agree that pharma should be involved in online health consumer communities:
1. ADD/ADHD Caregivers
2. Bipolar Disorder Caregivers
3. Epilepsy Caregivers
4. Cystic Fibrosis Patients
5. Rheumatoid Arthritis Patients
Among online U.S. adults (ages 18+) where n is at least 60

These findings clearly delineate opportunities for pharma brands in the online space. What do you think?

(Image courtesy of Trevor on Flickr.)