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

These patients naturally turn to social media to find information and each other 

PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In the six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers.

I wrote the fourth post, “Patients and caregivers are undisputed ‘power users’ of social media.” When a disease is rare, finding information about diagnosis, treatment and physicians is more challenging than for a more common disease. These patients naturally turn to social media to find information and each other. These online connections can be extremely powerful, not only for emotional support, but for treatment information.

Read my post to learn more, including stories from rare disease caregivers who have experienced this firsthand.

(Image courtesy of  WebTreatsEtc on Flickr).

the value of any communications network increases proportionately with the square of the number of users 

Last week Google+ opened pages up to businesses. When I was setting up the Siren Interactive page I was surprised to find a few things. The first is that there is no verification that you are from the company—for example, by using a company email that gets verified before the page goes live. Google only requires you to check a box that says, “I agree to the Pages Terms and I am authorized to create this page.”

I searched for a few pharma companies and found two pages when I typed in “Pfizer.” I highly doubt that either page is really from Pfizer, so it will be interesting to see how Google handles these imposter pages. This was previously an issue on Facebook, where at one point the fake Sanofi page was more popular than the real one.

A second surprise is that the administrator tools aren’t very advanced. For example, it appears that a brand or company page can only have one administrator. Also, the design of the pages are similar to Facebook.

Is Your Audience on Google+?
Google+ has an estimated 50M users versus Facebook’s 750M, and after an initial wave of enthusiasm, the number of weekly visitors to the site has fluctuated.

Read More

The UDP has the daunting task of providing answers and diagnoses to patients with medical mysteries that have long gone unsolved 

After its first two years of work, the Undiagnosed Diseases Program (UDP)  of the National Institutes of Health (NIH) released a report highlighting its results: 37 cases received a diagnosis, and 2 new diseases were discovered.

The UDP has the daunting task of providing answers and diagnoses to patients with medical mysteries that have long gone unsolved. Clinical researchers at the UDP take advantage of the expertise of their NIH colleagues in numerous medical specialties to collaborate in finding answers for these desperate patients. And in addition to helping individuals, they also work to advance the field of medicine with knowledge about both rare and more common conditions.

Overwhelming interest
The UDP called for applications back in May 2008, received 1,191 cases over time, and accepted 326 patients into the program. Each application requires a summary letter from a referring healthcare provider and complete medical records. Unfortunately, due to the overwhelming number of applications, the program currently has a backlog and since July 2011 has suspended acceptance of new applications. These numbers indicate the serious need for this program and highlight the thousands of people who are struggling to obtain a diagnosis. Working in rare diseases, we often hear stories from patients about their struggle to find a diagnosis – frequently taking years. Here’s one example from a Siren colleague: The Journey to Diagnosis Is Often Bumpy.

Read More

sign saying evolution

double the number of MDs used Google (87%) for professional research online as the next most-used search options 

Two studies were recently released regarding the online search habits of physicians. The first, Kantar Media’s Sources & Interactions, found that double the number of MDs used Google (87%) for professional research online as the next most-used search options (WebMD and PubMed, each at 43%). Google was one of six consumer search engines pulling significant usage; each was used by an average of 23% of physicians. That’s the same percentage that used each of the six medical sites on average, the study revealed. See the details on the chart at the bottom of the post.

Age matters
Kantar discovered wide variations in reported usage based on specialty, age, and other demographic factors. Google and Yahoo! were consistent performers across most groups, generally varying only within a two or three point range of average, while other sites showed wide variance. For example, PubMed was used by only 29% of family medicine doctors but 77% of infectious disease specialists. Older users preferred PubMed and Google Scholar, while younger users more frequently used general search engines Yahoo! and Bing, as well as WebMD and MDLinx. Interestingly, the study found that almost three times as many physicians who don’t see sales reps use UpToDate, compared with those who meet with reps.

Read More

these patients and caregivers are very motivated to obtain an accurate diagnosis and the best treatment 

PharmaPhorum asked Siren Interactive to write a series of blog posts about the world of rare diseases. In the six-part series, titled “Rare is different,” we’re showing how working within rare diseases is unlike other pharma markets, particularly in the knowledge and influence wielded by patients and caregivers.

I wrote the third post, “Patient and caregivers are key drivers of diagnosis and treatment in rare diseases.” As referenced in the last post, a typical physician might never encounter a patient with a rare disease over the course of his or her entire career. It’s understandable that most physicians develop expertise to do the greatest good for the largest number of patients. However, these patients and caregivers are very motivated to obtain an accurate diagnosis and the best treatment.

Earlier this year Siren Interactive published Uncommon Challenges; Shared Journeys. The book features 13 stories that provide a window into the lives of caregivers and patients battling rare diseases, revealing how each unique journey is, in fact, a shared journey. In my post I highlight a few excerpts from the book that show how these individuals came to a diagnosis and treatment plan. Let me know what you think in the comment section.

(Image courtesy of surlygirl on Flickr).