I ask myself how I can best help a future parent who will be in my shoes at some point down the road 

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.

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Wendy brings a unique perspective, as she is not only an industry leader but the mother of a daughter, Casey, with a rare disease 

When PharmaPhorum asked Siren Interactive to create a series of blog posts about rare diseases, we were thrilled to have the opportunity to share our thoughts. In the six-part series, titled “Rare is different,” we’ll show how the world of rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers.

The first post, “How empowered patients and caregivers are changing marketing for rare disorders,” was written by Siren’s founder & president, Wendy White. Wendy brings a unique perspective, as she is not only an industry leader but the mother of a daughter, Casey, with a rare disease. Read her story and please add your perspective in the comments.

Stay tuned for the next installment from Frieda Hernandez, who shares: “Why doctors are often stumped by rare disorders.”

It is our JOB to help our patients navigate their medical decisions with compassion, patience, and an open mind 

A recent QuantiaMD.com educational webinar for physicians was entitled, “The Patient Who Knows Too Much” as part of their “Difficult Patient” series. Indignation from patient advocates and a CNN story appears to have prompted a name change to “The Cyberchrondriac.”

You can register for free to view this presentation; however, you can’t see the comments unless you are a healthcare professional. To get a full understanding, I suggest viewing the presentation. It turns out that this case is about a patient with a mental illness who is expressing it via repeated doctor visits using information from the internet. Unfortunately, the physicians who present this case do not clearly express this and it comes across as a bit of an attack on empowered patients.

Leonard J. Haas, PhD, ABPP, starts off by saying: “Patients who present their expertise as telling you how to practice medicine are implicitly discounting your expertise.” I disagree. Often, patients are trying to understand what is going on with them or trying to find a diagnosis or new treatment.
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I'm assuming they are referring to brand sites where the focus is on specific treatments 

Only 11% of U.S. consumers seeking medical advice regularly turn to pharmaceutical websites according to an Accenture survey. Results show that 92% of people who go online for health information look to other online resources more frequently. These resources include medical, social media and informational websites.

This doesn’t seem like news to me.

I haven’t see the full study of 852 people, but for me, the key phrase in the press release is: “11% of survey respondents saying they most often use a pharmaceutical company’s website…” It makes sense that patients and caregivers would most often turn to other resources for medical information, not a pharmaceutical site.  By “pharmaceutical company’s website” I’m assuming they are referring to brand sites where the focus is on specific treatments. Naturally, brand.coms are supplemental to patient organization, medical and government sites.  I think they can be very important resources, but play a supporting role. What do you think?
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99 million U.S. adults are e-empowered patients using online information and tools 

The e-Patient has officially arrived. A growing number of people are using the internet to educate themselves on health and engage with each other via social media – both of which lead to empowerment. The latest Manhattan Research data shows that 99 million U.S. adults are e-empowered patients using online information and tools to take a more active role in their health care.

Patients have inserted themselves into the traditional relationship between physicians and pharmaceutical companies. Caregivers and patients are increasingly asking for specific treatments, and getting them.

With the huge amount of medical information available, there is no way physicians can keep up. Dr. Donald Lindberg, director of the National Library of Medicine, said, “If I read and memorized two medical journal articles every night, by the end of a year I’d be 400 years behind.” However, many patients are motivated to learn everything they can about their condition. This is especially true of rare disease patients, who in many ways are the ultimate e-Patients.

As one woman commented on the Facebook page for the National Organization for Rare Disorders: “When your doctor has to do an internet search for your disease, you are forced to become an empowered patient.”
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we need collaborative patients to engage in a participatory medical experience 

“Stop selling, start supporting,” Lisa Emrich told pharma attendees at ePatient Connections. “Do good for others and patients will notice, that’s the best marketing of all.”

Hearing strong statements like this directly from patients is what makes this event special. Last year, I was introduced to the inspirational ePatient Dave and this time, I met more empowered patients. I agree with Kerri Sparling who made the point that as an industry we’ve got to find a way to provide the travel and honoraria support these patients require in order to participate in these conferences. Note that when I use the word “patients” I’m using it in the broader context to include caregivers and family members.

The conference was full of interesting data and presentations, but I’m going to focus on the patients.
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this initiative has the power to bring market forces to bear on health care 

The launch of the Community Health Data Initiative is one of those watershed moments that we will one day look back on as an event that revolutionized health care. By opening up its vast stores of data to the public free of charge, the Department of Health and Human Services (HHS) is seeking to both raise awareness of community health performance and spark initiatives to improve it.

What’s in those data stores? Things like smoking rates, obesity rates, access to healthy foods, and hospital level information on measures of quality performance and patient satisfaction.

“Part of this project is about making that data available and accessible to the public and it’s never happened before,” said Kathleen Sibelius, Secretary of the HHS, announcing the initiative.

What Will People Do With That Data?
“Let me give you a few examples,” Sibelius said. “A patient with a heart disease could go online and choose the local hospital where the rates of healthcare associated infections are actually dropping, not the hospital down the street where they’ve been increasing.”

In other words, this initiative has the power to bring market forces to bear on health care.
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Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance 

HealthCentral recently surveyed 2,888 people on their website with the following chronic conditions: acid reflux, asthma, breast cancer, chronic pain, depression, diabetes, IBD and rheumatoid arthritis. The goal was to identify the traits of a patient who feels empowered to take the lead in managing his/her care. The authors came to some interesting conclusions.

Personality Counts
The study notes: “Personality traits seem to play a much stronger role in patient empowerment than education, income or source of health insurance.”

The study found that empowered patients have: “a high need for cognition, which means that they’re not happy with simply knowing a particular prescription successfully treats their condition, they want to know why it works. These people want to understand not only their condition but their treatment options.”

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Last week the Center for Business Intelligence hosted its 9th Annual Forum on eMarketing for the Bio/Pharmaceutical Industry in Philadelphia, PA.

For me, the most powerful speaker was e-Patient Dave deBronkart, who shared his personal battle with Stage IV kidney cancer. Using what he learned online from other patients on ACOR, Dave was able to get into a clinical trial for Proleukin which saved his life. He told the room, “You will all be a patient one day.” Dave’s presence continued to be a reminder that pharma needs to focus on patients.

There were a variety of excellent speakers, but a few themes emerged.
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No doubt about it. Adherence is an important topic. 

A recent discussion on ePatients made me think more deeply about the impact online tools can have on adherence. The discussion focused on a comment calling attention to the patients out there who are, “not motivated to become informed, or invest the time/energy/money in using any of these tools.”

No doubt about it. Adherence is an important topic. According to Johns Hopkins, each day about 50 million Americans either forget to take a medication their doctor has prescribed or intentionally decide not to take it. Medications that are never taken do no good at all, and there’s often a high price to be paid down the line in terms of healthcare expenditures.

For pharma marketers, this is both a challenge and an opportunity. Because, as many nonprofits have discovered, the best audience is the one you already have. That is if you can get them to listen. Read More