The FDA gains valuable perspective and input on the patient’s perception of the burden of their disease and their potential tolerance for risk and side effects of new medicines, especially when the disease is life-threatening. 

We are pleased to feature a guest blog post from Catherine Sohn. She has more than 20 years of pharmaceutical marketing and strategic product development experience with one of the world’s largest companies and is currently an independent consultant working with companies focused on life science and rare disease.

Having a personal passion for furthering the cause of bringing new medicines for rare diseases to the marketplace, there was no doubt that I would be in Silver Springs, MD on March 1 to attend the inaugural FDA Rare Disease Patient Advocacy Day. According to Gayatri R. Rao, MD, JD, acting director of the FDA’s Office of Orphan Products Development, the event was designed to create a dialogue among all stakeholders involved in rare disease product development, including the FDA, patients, healthcare practitioners, the NIH, patient advocates and the pharmaceutical industry.

Another event objective was to support solidarity within the field of rare diseases by engaging with the patient advocacy community and providing updates on the FDA’s role in product development. To highlight the FDA’s effort to help patients and caregivers learn how to become advocates for advancement in treatments, she described the little-known FDA Patient Representative Program, in which patients work with the FDA and sponsors throughout the product development process.

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at the center of healthcare innovation is the patient/caregiver 

“Passion isn’t enough to make a difference,” said Pat Furlong, president of the Parent Project Muscular Dystrophy (PPMD), regarding the ways patients and caregivers in the rare disease community can impact changes in healthcare. “You must listen, be open and flexible, make decisions, and execute the plan.”

As the founder of PPMD and mother of two sons who lost their battle with Duchenne in their teenage years, Pat speaks from experience. PPMD is the largest nonprofit organization in the United States solely focused on Duchenne muscular dystrophy. Read more about this organization.

Pat was one of three participants in the Healthcare Businesswomen’s Association’s panel discussion on global healthcare changes and their impact on patient advocates, corporations, and the world. The other two participants were Dr. Freda Lewis-Hall, chief medical officer at Pfizer and HBA’s “Woman of the Year,” and Jeneanne Rae, founder and president of Motiv, experts in design strategy and innovation.

Siren’s president and CEO Wendy White moderated the esteemed panel before an audience of about 700.

The Power of the Patient in Times of Change
The panel was in full agreement that the current health system needs to change. Each woman had her own perspective, but each agreed that at the center of healthcare innovation is the patient/caregiver. When it comes to getting involved in the drug approval process for a rare disease, Pat thinks the government listens to patients and caregivers. “A room full of 10 crying moms is hard to deny,” she explained. And when it comes to challenges of getting treatment paid for, she feels that patients will no longer take “no” for an answer. She also thinks that the cost of not treating patients is much higher than the cost of treating them.

Along those lines, Jeneanne Rae contended that it is time to move from a sickness-based healthcare model to a wellness-based healthcare model.

Freda Lewis-Hall agreed. She said that it is time to innovate the model of innovation in healthcare. Read More

Groups, mainly led by patients, are now beginning to take matters into their own hands to address problems that the health system has continued to ignore. 

The safety of internet health data has been an ongoing concern, as well as the subject of a good deal of  research.  A recent post on e-Patients.net brings up an interesting point on this topic from an editorial entitled, “Trying to Measure the Quality of Health Information on the Internet: Is It Time to Move On?” in the latest issue of the Journal of Rheumatology.

The authors, Amol Deshpande, MD, MBA and Alejandro Jadad, MD, DPhil, FRCPC, FCAHS, note that:

“Researchers, for their part, continue to view the role of health professionals as “providers and protectors,” able to control, or in some way “regulate” the types and amount of information that patients, their loved ones, or the public should or could access. This contrasts sharply with what is happening today in the real world. Groups, mainly led by patients, are now beginning to take matters into their own hands to address problems that the health system has continued to ignore. Instead of conforming to the traditional asymmetrical offline patient-physician relationship, the public is embracing the tenets of Web 2.0, opening new horizons for a level playing field and improved health services.

The time has likely come to end our Byzantine discussions about whether and how to measure the quality of online health information. The public has moved on. It is time to join them in what promises to be an exciting voyage of human fellowship, with new discoveries and exciting ways to achieve optimal levels of health.”

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if we could start by changing the way we think about Advertising in the Social Media space, we may actually find ourselves driving much needed solutions for our patients 

It may be kinda weird to hear a marketer talking about the limits of advertising, but here I am. When marketing within Social Media, Advertising is the LAST thing you want to do. With Social Media it is far more beneficial to communicate around a Movement. No one understood this better than the Obama Campaign. They didn’t run advertisements that said “Vote for Obama”. Instead they initiated a movement around the words “Yes We Can” and the fundamental desire for hope and change. There is a great presentation by Adam Cahill that showcases this Social Media breakthrough. Read More

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Together, the newly diagnosed and the chronically ill account for only 40% of the health seekers but 90% of the health seeking traffic. 

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.

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By communicating with them in a familiar way and seeing the work through their eyes, you can ensure your message will resonate with one that is focused around key transition points along each patient’s individual journey 

The internet allows relevant and compelling messaging that intersects patients at the best time, moving them more efficiently toward therapy, support and better outcomes.

If a patient’s journey is mapped out through diagnosis, life changes, conversions and adherence issues, specific messages at just the right time could help support where there are the greatest fallouts.

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Your website is like your “virtual sales force” bringing in prospects from the all over the internet. Our research around chronic disease state sites is that over 50% of the visitors come in through disease related terms — and not always the obvious ones. It’s less about the medicine than it is about the disease for most people. The “long tail” refers to the matchmaking between the few people searching for specific information and longer maybe multi-word description of a page devoted that that concept. This is in contrast to the broader keywords that might bring in people through the homepage for your generalized marketing messages.

If you are “listening through your webdata” you might find that your patient and caregiver audiences refer to themselves or are talking about different issues using different terms than you might expect. As a pharma marketer, you probably can’t engage in the conversation. However, anything they are discussing can certainly be used to optimize your search campaign.

This is an especially powerful technique in a chronic disease community. You can address issues that THEY see as important. KPIs for measuring how well your “long tail” search engine optimization strategy is working are well defined by Stephan Spencer below:

Page Yield
This is the percentage of unique pages that yield search-delivered traffic in a given month.

This ratio essentially is a key driver of the length of your “long tail” of natural search. The more pages that yield traffic from search engines, the healthier your SEO program. If you have only a small portion of your website delivering searchers to your door, then most of your pages, your virtual salespeople, are warming the bench instead of working hard for you. My colleague Brian Klais has a name for the webpages that aren’t driving any search traffic — freeloaders.

Keyword Yield
This is the average number of keywords each page (minus the freeloaders) yields in a given month. Put another way, it’s the ratio of keywords to pages yielding search traffic.

The higher your keyword yield, the more of the “long tail” of natural search your site will capture. In other words, the more keywords each yielding page attracts or targets, the longer your tail. So an average of eight search terms per page indicates pages with much broader appeal to the engines than, say, three search terms per page.
The average merchant in our study had 2.4 keywords per page.

Visitors Per Keyword
This is the ratio of search engine delivered visitors to search terms.

This metric indicates how much traffic each keyword drives and is a function of your rankings in the search engine result pages. Put another way, this metric determines the height or thickness of your “long tail.”