Posted by Doug Yamate | 11:56 am on Wednesday November 06, 2013 |
It’s truly an inspiration to see a young man turn a tragic moment into a youth movement toward adherence
You’ve heard the saying, “Laughter is the best medicine.” And in fact, laughter does have its emotional and physical health benefits. But what about laughter, or comedy, as a means to engage and educate those affected by a rare, genetic disorder? This was the vision of Patrick James Lynch, a severe hemophiliac and actor/writer/producer—and he made it happen.
Lynch and his brother were both born with severe hemophilia, a bleeding disorder that primarily affects males. While away at college, Lynch’s brother suffered a fatal bleed. A lax approach to his treatment regimen was discovered to be a contributing factor. From this devastating tragedy, Lynch found a calling—to use his personal experiences, acting talents, and entertainment industry connections to reach and educate young hemophiliacs on the importance of being adherent and proactive in their care. Read More
Posted by Stephanie McDonald | 3:40 pm on Monday November 04, 2013 |
We have a medical system that can sometimes hinder diagnosis
As part of our series on diagnosis, I recently had the opportunity to interview Rebecca Hollingsworth, Administrator of In Need of Diagnosis, Inc. (INOD) about her organization’s approach to diagnosis and its advocacy efforts.
Where it all began
In Need of Diagnosis, Inc. was founded by Marianne Genetti in 2006. Genetti, an undiagnosed patient with a rare disorder herself, created this non-profit to help people in similar circumstances following a chance meeting with a physician at a National Organization for Rare Disorders conference. The main purpose of the volunteer-based organization is to serve as a resource center for people with diseases that are yet to be accurately diagnosed and to promote changes in the medical delivery system that will help to increase both accuracy and timeliness of diagnosis. Read More
Posted by Eileen O'Brien | 2:57 pm on Friday December 21, 2012 |
Patient advocate, Weiss, was looking to pharmaceutical companies to provide accurate answers to his questions on prescription medication
“Social media is a wonderful green field of opportunity. It’s also messy—so get used to it!” said Peter Pitts as he launched the Social Media, Mobile & Gaming for Pharma conference last week in New York City. I copresented with Katie White, communications manager at Lundbeck, who shared a successful Facebook case study.
A great feature of the event was the inclusion of several patients and a few healthcare professionals. The conference covered a lot of material, but one point that resonated with me is that many healthcare professionals and patients are unaware of pharma regulatory restrictions.
Bunny Ellerin led a panel including Wen Dombrowksi, MD, Robbie Freeman, RN, and Michael Weiss, chrohn’s disease activist. All the panelists were sophisticated users of social media and were actively looking for pharma to participate in the space. When asked, all three were unaware of the restrictions that the pharmaceutical industry faced, in particular the concept of fair balance–when a drug benefit is mentioned the risks must be included as well.
Patient advocate, Weiss, was looking to pharmaceutical companies to provide accurate answers to his questions on prescription medication for his condition. He was baffled as to why pharma wouldn’t talk to him via his preferred social networks.
Posted by Eileen O'Brien | 12:37 pm on Friday October 19, 2012 |
spokesperson, Cynthia Nixon, is featured on Facebook and a YouTube video
“Social media is the world’s largest focus group, we need to be quiet and listen,” said Charlotte McKines at the Digital Health Coalition’s Fall Summit. The Vice President of Global Marketing Communications at Merck shared her views on October 15 in Philadelphia. “Success comes when you know your customer, drive value for your customer and learn from every customer interaction.” Other speakers echoed the need to use social media listening to gain insights and help drive better results.
“Hiding behind ‘if we don’t hear it, we don’t have to respond to it’ is just not right,” according to Bob Brooks from WEGO Health. He shared preliminary data from their health activist survey including the quote, “Social media is a vital connection between patients and the companies who serve them.” When the full data is released I’ll be sure to blog about it.
Posted by Eileen O'Brien | 10:21 am on Friday October 05, 2012 |
Your job as a communicator is to produce content that makes your audience go ‘holy smokes.’
My favorite quote of PodCamp East was from C.C. Chapman, who shared his miniskirt theory of blogging: “It should be long enough to cover the essentials, short enough to keep it interesting.”
I know you are thinking, “What’s PodCamp?” According to the website, it’s an “innovative gathering of new media enthusiasts, professionals, and anyone curious about what’s next in blogging, social media, podcasting, video on the net and more.” What prompted me to get out of bed early on Saturday morning to attend was at past PodCamps, I’ve gained practical knowledge, met some interesting people and had more than a few laughs.
The event was an “UnConference” where the attendees themselves presented the sessions, which were full of interaction and conversation. The idea is to run the event with volunteers to keep it free or low cost (PodCamp East was $20, which was donated to charity) and avoid sponsored presentations (otherwise known as pitches). BarCamp is another example and one is scheduled in Philadelphia for November. I’m fortunate to live in a city where there are groups of creative and innovative people who organize interesting events. I recommend exploring the associations (such as Social Media Club) and UnConferences in your town and checking them out.
Posted by Eileen O'Brien | 3:34 pm on Friday July 06, 2012 |
The people most highly motivated to support or to even initiate investigations of a rare condition are those personally affected and their close relatives
Sharonne N. Hayes, MD, from the Mayo Clinic, recently authored a blog, “The potential of patient initiated research in studying rare diseases,” where she described her experience with the rare disease SCAD–spontaneous coronary artery dissection. Katherine Leon had connected with other SCAD patients via the WomenHeart Inspire online community and over the years had collected information on 70 people. At a conference, she approached Dr. Hayes about how she could help spur more research into SCAD, and a partnership was born. At the conference Katherine also met SCAD patient Laura Haywood-Cory who helped recruit patients online and keep momentum going.
“Our research team’s success in conceiving, piloting, refining, obtaining funding and recruiting for SCAD research, including the development of a DNA biobank for future genetic investigations at Mayo Clinic,” wrote Dr. Hayes, “could not and would not have transpired without the active and ongoing participation and support of ‘SCAD ladies.’” Mayo has followed-up with another trial with 200 SCAD patients and an equal number of their close relatives.
“The people most highly motivated to support or to even initiate investigations of a rare condition are those personally affected and their close relatives,” noted Dr. Hayes. This is something we have seen many times at Siren through our 12 years working with rare disease patients. The SCAD research is just one highly visible case. Other rare disease patients and caregivers are not only recruiting for research but funding it themselves.
Posted by Justin McLeod | 1:43 pm on Wednesday May 16, 2012 |
34% of consumers said content on social websites would affect their decision about taking a certain medication
A recent report from the Health Research Institute at PwC confirmed that pharmaceutical companies remain slow to adopt strategic social media practices. While 8 of the 10 healthcare organizations surveyed did have at least some social media presence, consumers actually engage in 24 times more social media activity than any of these companies.
PwC’s report, titled “Social media ‘likes’ healthcare: From marketing to social business,” found that half of the organizations surveyed “worry about how to integrate social media data into their businesses and how to connect social media efforts to a return on investment.” Additionally, a majority of organizations “reported that their social media efforts were decentralized and managed by their marketing and communications departments.” In other words, pharma is just starting to get the ball rolling with social media, but their efforts remain at a tactical level rather than a strategic one.
Posted by Eileen O'Brien | 11:34 am on Friday March 02, 2012 |
Pinterest does not appear to allow boards to turn off or moderate comments before they go live
If you haven’t heard about the new social network Pinterest, it’s a “virtual pinboard.” It allows users to organize and share internet content (typically images) by pinning it to virtual boards. The boards can be public, so users can follow each other and comment. Per Pinterest, “Browsing pinboards is a fun way to discover new things and get inspiration from people who share your interests.”
The site is growing rapidly, and according to comScore, in January Pinterest attracted 11.7M unique visitors with the average user spending 98 minutes per month on the site. The site skews female (18-34 years old) and Midwestern.
As a writer I like words, but for visual thinkers Pinterest provides a creative opportunity. A few blogs and a discussion during the last #SocPharm tweetchat got me thinking about the possibilities for biopharma companies and brands. I especially like the idea of using photos to tell the story of a patient’s journey to diagnosis. However, there are a few big concerns.
Posted by Eileen O'Brien | 11:07 am on Wednesday February 08, 2012 |
Facebook is rolling out the timeline format to brand pages on February 29, 2012
Siren is proud to support the Digital Health Coalition, a nonprofit created to serve as the collective public voice and national public forum for the discussion of the current and future issues relevant to digital and electronic marketing of healthcare products and services. Led by Mark Bard and Joe Farris, the Digital Health Coalition held an event on February 6 in New York City as part the ePharma Summit. Bard released and reviewed “Social Media and User-generated Health and Medical Content: Guiding Principles and Best Practices for Companies and Users.” I strongly recommend reading these common sense principles.
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.
Posted by Eileen O'Brien | 10:44 am on Friday January 27, 2012 |
Use of these materials results in action: a conversation about a prescription drug
The latest Manhattan Research ePharma Consumer® study confirmed that pharma-supported interactive materials benefit both patients and pharma.
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.