I know there are more parents like me out there 

Today I found this amazing blog entitled LittleMissHannah. It’s about Hannah Ostrea, a little girl with Gaucher’s Disease, written by her mother, Carrie.

Carrie says she is, “on a mission to find and compile all blogs and up-to-date websites of children with rare diseases (or adults who were diagnosed as children). There are over 6000 rare diseases affecting children in the world, and I can’t do this by myself. I’ve been looking, and I’ve only found less than a dozen blogs… and I know there are more parents like me out there.”

If you are a rare disease blogger, or know one, please contact Carrie via the site.

Alone we are rare. Together we are strong.
A rare disease is one that affects fewer than 200,000 Americans. It’s estimated that more than 80% of people with rare diseases are children.

Carrie blogs to raise awareness and share her family’s story. She was quoted in a Time magazine article on rare disorders: “Deep down I wish the general public would just recognize what families like ours live through on a daily basis. And how rare disease affects each and everyone one of us down to the core.”

Carrie’s efforts remind me of the power of the web and the importance of sharing stories.

This post was contributed by Eileen O’Brien, Director of Search & Innovation for Siren Interactive. You can connect with her on Twitter at @eileenobrien.

(Image courtesy of Duncan Harris on Flickr)

The speakers espoused the transparency they recommend for social media interactions by being very honest 

A few weeks ago I was fortunate enough to be invited to speak at the Social Media for Pharma seminar alongside Clarissa Trujillo, Manager, Communications at Lundbeck and “chief tweeter” for @lundbeckinc, and Mary Dunkle, VP for Communications at the National Organization for Rare Disorders (@rarediseases).  We talked about the use of Trust Agents by pharma in social media as illustrated by Lundbecks’s Raise Your Hand campaign for Rare Disease Day 2010.

The moderator, Bill Evans (@ohnoitsmrbill) from Fleishman Hillard, kept things lively and interactive breakout sessions helped to get the audience talking with each other. While all the speakers were excellent, for me, the highlights were the pharma case studies.  The speakers espoused the transparency they recommend for social media interactions by being very honest. Many shared their mistakes along with successes and provided practical tips on how to get started.
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Using the wrong words can cause problems 

We’ve all had the experience of trying to communicate with someone who speaks a different language – and we all know how easy it is for misunderstanding, frustration and hurt feelings to occur.

As an exchange student in high school, I learned these lessons first-hand. Attempting to complement my host sister on a new dress, I told her I hated it – only a vowel difference in the words, but an important vowel! On another occasion, I bought a bouquet of flowers for my host mother – which she promptly threw in the trash. I had unwittingly brought a funeral bouquet into the house, an unfortunate omen. Read More

When the only tool you have is a hammer, everything looks like a nail 

There’s an old saying: When the only tool you have is a hammer, everything looks like a nail.

It’s a wrong-headed approach, but a tempting one when solutions aren’t clear, and it’s too often the approach that is recommended to those looking for ways to reach audiences online. Companies that specialize in search are prone to thinking that no matter what the question is, Google is the answer. Those that are focused on social networking will tell you it’s Facebook or Twitter, and those that specialize in email and database management will tell you CRM is the solution. Read More

With the holidays quickly approaching, it’s important to remember those who won’t be gathering with loved ones or feeling much cheer this season. Patients and their families – stuck in hospitals or recuperating at home – may be feeling isolated and out of touch.

Fortunately, in recent years, there have been some great uses of technology that truly support the lives of patients and their families in these situations. Two sites in particular stand out as ways for patients to stay in touch with their friends and family across the world.

CaringBridge:
CaringBridge allows patients (or caregivers) to create free personal websites about their disease. Patients have full control over their privacy levels and can restrict access to any number of people they prefer. The site is not searchable, so patients’ privacy is secure. The website operates as a 501 (c) (3) non-profit, so donations are tax deductible.

CarePages:
Similarly, CarePages allows for the creation of free patient websites to update friends and family members. Privacy is protected by a registration process and each website manager personally approves each visitor before they are able to view that particular site. CarePages is a for-profit organization and offers branding to supporters, often hospitals, in order to give the service to patients at no charge.

Both of these sites allow patients and caregivers to focus on the healing process, rather than the burden of keeping friends and family updated. It takes just minutes to create a personalized webpage where patients can update their online journals and inform loved ones about their progress.

Plus, it facilitates two-way conversation. Guests are able to leave comments and otherwise encourage a patient’s recovery.

Recently, a close friend of mine ended a long battle with complications related to Bile Duct Cancer she had suffered five years ago. Going through this process and reading the heartfelt postings from all over the country was helpful. I could check on her status whenever I needed to without disturbing anyone.

I hope you’re able to spend the holidays with your loved friends and family.

(Image courtesy of genezkool323 via Flickr)

Update: Post was updated on 12/18 to correct business structure of CarePages.

In recent years, we’ve witnessed the growth of a “Trust Economy” in which success is largely dependent on how much the supplier of information is trusted, which may or may not be connected to whether or not that trust is actually earned.

The term “trust metrics”was originally used to describe the need to design software that assured that customers’ financial data would be secure. As social networks evolved, it was used to indicate how much a member of a community is trusted.

We can take this one step further, using trust metrics as a measure that can be applied to the network of relationships that healthcare consumers turn to online, including government sites, nonprofits, message boards, each other, etc.

Trust Metrics for pharmaceutical companies are low, despite the fact that they are closely regulated by the FDA and have valuable, carefully tested, scientific data to share with consumers. In many ways they are the best source of drug information on the internet today. The only healthcare player less trusted than pharma is insurance.

It doesn’t have to be that way. There are more opportunities than ever for healthcare marketers to connect in new ways. By building relationships based on solid principles and taking full advantage of new online opportunities, all healthcare marketers can create an important place for themselves in the “Trust Economy.”

The more you dig deep, the more you can discover, and the more you can discover, the better listeners you will be. 

Traditionally, listening to your patients and caregiver audiences occurs through market research, focus groups, surveys and the like. While still important initiatives, these can be costly and time consuming. Moreover, market researchers have to jump through hoops in an attempt to get data that is not skewed by user psyche.

Fortunately, we now have web analytics to add to the picture. Though it will not complete the entire picture of a patient profile, it does offer some valuable and actionable insight with relative simplicity.

The internet has evolved to a place where users not only receive information, but also leave information, all kinds of valuable information about themselves and their peer groups.

Your potential patients are leaving information about themselves with every click. It’s likely that you already have an analytics tool in place, but the amount of data may be overwhelming. Here are a few metrics that will help you pull out patient and caregiver needs.

Top viewed pages:

This metric will tell you what pages are most visited by your users. For example, the sleeping aid, Lunesta has a page entitled, “Lunesta and Dependency“. If this page is among the top viewed pages, one may infer that addiction to sleeping aids is of great concern to patients, and marketing executives can act accordingly by creating more robust messaging about how Lunesta is a non-narcotic.

Referring Search Phrases:

A referring search phrase is a word or series of words people have searched to get to your website. Some examples of search phrases for lung cancer may be, ‘lung cancer’, ‘cure for lung cancer’, or ‘lung cancer treatment’.

This is more of a characterization of a visit than a metric, but no less valuable. Referring search phrases reveal what language your patients speak in. Unfortunately, it also tells us what poor spellers we are – which, by the way, is also important. Even poor spellers need healthcare, right? There are ways of helping them find you, which is another conversation about search engine marketing…

Click-Through Rate:

The click-through rate is calculated by dividing the number clicks on a specific link by the number of times that link was viewed. For example, let’s assume you have a button on your therapy’s home page that says, “Sign Up for a free trial”. It has been viewed 100 times in the last week, but only clicked on by 2 people, you would not only have a click-through rate of 2%, but you also have a patient audience who’s not interested in your free trial.

It is important to note that this only tells you what’s happening. The patient is not interested. To discover the ‘why’ behind the ‘what’ requires some further investigation, which is another conversation about user testing and online intelligence…

Bounce Rate:

The bounce rate has been hailed by Avinash Kaushik as sexiest metric ever. It’s simple and immediately actionable. Rather than tell you what your patients need, the bounce rate tells you that what you’re giving them, they don’t need.

The bounce rate is simply the number of visits that either had a single page view* or stayed for less than 15 seconds divided by the total number of visitors.

*A single page-view is not necessarily an unsuccessful visit, depending on the goal of the site. For example, www.nytimes.com may consider a single page view a success if the user got what they came for and that would be to read one article.

Starting with these four metrics, see what interesting insight you can gain from your patients’ behavior. The more you dig deep, the more you can discover, and the more you can discover, the better listeners you will be. And we all know that being a good listener is the cornerstone of a good relationship.

(Image courtesy of practicalowl via Flickr)

SEM through optimization and paid search campaigns for chronic and niche disease states turns out be be a great way to do patient recruitment. There are two major challenges in this area, the first is reaching niches markets, and the second is creating a trust so that patient recruitment is possible.

Finding patients in niche markets is difficult, but the online channel provides opportunities. One of these opportunities is doing paid search campaigns:

• Search engines are #1 resource for those seeking health information – used by 86% of those with health inquiries
• 66% of health information seekers began their last online health inquiry at a search engine

Adding to a paid search campaign, branded websites should be organized around organic search engine terms. This is a pull technique instead of a push. By providing good, relevant information organized around the user, technology can serve as the matchmaker — putting the best drug information in front of the patients who need it most. These are then viewed as resources, not ads. They build trust through transparency and provide many opportunities for high levels of engagement.

Newly diagnosed – represent 5% of overall health seeker population, but 40% of the overall web traffic. They search intensively and cover a lot of ground in the first few weeks following initial diagnosis. So if a brand is not visible online for the newly diagnosed they are missing a golden opportunity to be the to tell their story to the patient population hungry for information.

The chronically ill – represent 35% of the overall health seeker population, but 50% of the web traffic. They search regularly for new treatments and information, and are very active with groups and list-servs.

As we move into the future with more personalized medicine, the need for good SEO will only increase. Already, niche markets are growing faster than rest of market: Overall growth is slower (5-6% in ’08) but niche products and specialty pharma is growing at 14-15% in ’08.

we can help shape the dialog if we use some of the same powerful techniques to listen and influence the physician, patient and caregiver conversations. 

Maybe we can all learn something from the NRA. Whatever your political leanings, you have to admit the NRA has a powerful lobbying voice. Patient and caregiver groups that are dealing with chronic disease states should be just as powerful. What is needed is great communication and transparency.

As pharma marketers, we can help shape the dialog if we use some of the same powerful techniques to listen and influence the physician, patient and caregiver conversations. The first order of the day is to actually have a direct relationship with patients and caregivers. Then, listen to the participant member issues and respond appropriately.

If you have a new drug that Medicare is not fully covering you can use your relationships with the community to help force change. You can solicit feedback from the community to help decide on new formulations. You can directly address any negative press before it gets out of control.