I went to the first National Organization for Rare Disorders (NORD) Summit a few weeks ago in DC and learned that ONE of the major problems with bringing more treatments to more people with rare disorders is that there is often no natural history (database) of people with rare disorders. (There are other issues, not the least of which is not enough trained scientists to develop good assays to test and not enough scientists to follow through with the research on the drug’s overall effect on humans once some likely candidates have been identified).

Rare Disorders as a Public Health Issue

First, let’s assume this is a public health issue that America should be funding.  According to Dr. Tim Cote, head of the orphan drug division of the FDA (sitting on the dais with Janet Woodcock, director of CDER, and Francis Collins, leader of the human genome project, among others), everything we have learned about how the human body works we have learned from people with rare disorders.  It is at that end of the spectrum that innovation happens. [Read more! →]

When you think about some of the data from the Pew Internet and American Life Project as it relates to rare disorders, there are some interesting facts that emerge.  Two of the main groups that are searching online are the newly diagnosed and the chronically ill (and their caregivers).

Newly Diagnosed

The Newly Diagnosed patients search intensively and enlist a wide network of friends and family. They desire 24-hour access to expertise and similar patients. They make up only 5% of the health seeker population but account for 40% of the online health searches.  40% — They are searching intensively giving themselves a crash course on their disease.

Chronically Ill (and caregivers)

Chronically Ill patients search regularly for new therapies and are very active online.  They chat, belong to list-serves and join online communities.  They represent 35% of the health seeker population but 50% of the online traffic.

[Read more! →]

Katie Mihelich, VP Account Services at Siren Interactive, contributes this post:

As we have discussed previously, there are risks and rewards to social media in healthcare. With more and more patients and caregivers seeking information online and creating their own online support groups through social networks, pharma has been challenged to figure out how to participate within the regulations without jeopardizing trust.

At last week’s Online Marketing Summit (OMS) in Chicago we revisited how the Internet has changed the way we market and manage our brands.

While the gamut of key metrics and online solutions were presented, the one thing that bubbled to the top for me and that was most relevant to the rare and chronic disease industry was the steady growth in email marketing, and how social marketing and email marketing are converging.

[Read more! →]

Last week, the  Web 3.0 conference was held in New York City.  As we are still struggling with what to do with Web 2.0 in pharma marketing, now here comes Web 3.0 faster than we expected. Maybe this is the answer we in pharma have been looking for — the elusive payoff for social media, recognizing the value of trust online and bringing the human element into the picture along with the technology.

Web 3.0 technologies make the organization of information radically more fluid and allow for new types of analysis based on things like text semantics, machine learning, and what we call serendipity — the stumbling upon insights based on just having better organized and connected information.

Nowhere is the promise greater than for rare disorders. As we see over and over with patient stories from e-patients.net and stories in the New York Times, disparate information gathered together with motivated people can create surprising results.

[Read more! →]

Linda Martens, Content Strategist at Siren Interactive, contributes this post:

During my time as a hospital social worker, I spent my days talking to people with all types of illnesses – chronic and acute, minor and serious, treatable and terminal. I learned that there are many ways people relate to and cope with their diseases. But I can’t recall ever talking to anyone who thought they WERE their disease.

Since it’s the people — not the diseases — we’re creating websites for, it’s important to keep this difference in mind. Addressing the disease, not the person who has it, can lead to all sorts of communication failures.

[Read more! →]

When it comes to marketing, there is nothing more powerful than face-to-face communication. Traditional marketing in healthcare usually means creating brochures, sending out sales reps to talk to specialists and hosting various in-person meetings.  However, many marketers are realizing the need for increased digital media and shifting more of their budgets to the online channel. This is particularly important for marketing therapies that treat rare disorders. In the world of rare disorders, traditional marketing must be well integrated with digital marketing since most rare disorder patients are online throughout their patient journey. Here are two important insights that make traditional and digital marketing a little different when focused on a rare disorder:

[Read more! →]

Rob Laucius, Senior Developer at Siren Interactive, contributes this post:

The healthcare industry isn’t widely considered to be perched atop the bleeding edge of technological advances. Many doctors’ offices still employ wall-sized shelves of paper-based patient data. Major pharmaceutical corporations are not making many friends on facebook. Despite obstacles like these, my position at Siren Interactive allows me to infiltrate this technologically-impaired world and plant seeds of advancement. One new technology that has caught my attention is called Cufón, and it’s a brand new solution to a problem that has plagued the World Wide Web since its inception.

[Read more! →]

LaTonya Hicks, Office Manager at Siren Interactive, contributes this post:

As a mother you want to protect your children from harm, and you do your best to ensure they grow into healthy, educated, responsible adults. But be that as it may, sometimes life can throw you a curve ball when you least expect it.

My son was diagnosed with Juvenile Myoclonic Epilepsy (JME) at the age of 13. He had his first grand mal seizure on my daughter’s 18th birthday. The doctors did not medicate him at that time because they did not find any abnormal activity in the brain, and said it was a possibility that he might never have another seizure again. After an overnight stay in the hospital and a series of tests, he was sent home the next day, and for the next 3 months I was on guard.

It’s a feeling of sheer terror to watch your child go through something that they are not even aware is happening to them. I thought I had lost my child. When the seizure stopped he stopped breathing. The feeling I had at that moment will never leave me. It’s one that I never want to experience again. To this day I am unable to sleep through the night. I resolved to educate myself about this condition.

[Read more! →]

Demographics play a key role in reaching patients online. Currently we infer the behavior of rare disease communities from the data gathered about chronic disease communities. This may not be a perfect fit — there are some people (including me) who think the online behavior in rare disease communities is more engaged than for more common chronic diseases.  The technologies available are changing rapidly and how people interact is affected by multiple issues.

This is why we as pharma marketers need to pay attention to the makeup of a patient community and use that knowledge to anticipate their online behavior based on the best available data. For example, young men between the ages of 18 and 24 (say, hemophilia patients about to take responsibility for their own care) will use the internet for social connections and information quite differently than older e-patients living with cancer.

[Read more! →]