Author: Jerry Matczak

Community Manager for the Lilly Clinical Open Innovation team. If you can place the lyrics "Gerela's Gorrilas are here for the show," know who created the Terrible Towel and smile broadly at memories of the Immaculate Reception you know a little about me.

All Posts by Jerry Matczak

The Power of Community for Rare Disease Patients 18

Clinical Trials, LCOI • Tags: , ,

Bens FriendsRDD_Infographic_20130225Wikipedia states:

In the United States, the Rare Diseases Act of 2002 defines rare disease strictly according to prevalence, specifically “any disease or condition that affects less than 200,000 persons in the United States,”[2] 

To give a sense of magnitude and impact, there are roughly 7,000 rare diseases and collectively they affect 300 million people worldwide. 1 in 10 people in the US suffer from a rare disease. (Source: Siren Interactive)

Coping with rare disease

Those with rare diseases can face serious challenges. Attaining a proper diagnosis can be difficult, even among the more well-known rare diseases. Symptoms are often confusing and mis-diagnosis is not uncommon.

In fact, according to the FDA, for one-third of those with a rare disease, accurate diagnoses can take one to five years. And, patients face challenges associated with finding and accessing care:

…  [patients are] often are so isolated that they may never know anyone else with the same disease. Patients often must travel long distances to visit the few doctors knowledgeable about their illnesses, and the costs involved with diagnosis, treatment, and other related expenses can be exorbitant.

With a little help from my friends

One way rare disease patients have found a way to meet their challenges is by connecting with one another online. Bensfriends.org is one such place where patients and caregivers are conversing, sharing and supporting each other.
More…

ePharma Summit Top 5 3

LCOI • Tags: ,

I had the pleasure of attending the ePharma Summit 2013, a premier pharmaceutical marketing event, in New York City March 4-6.  I had high hopes that this conference would be valuable to Lilly COI, but I was a little uncertain.

My uncertainty centered around whether pharma marketing methods, tools, topics, organizations and people would translate to Lilly COI’s objectives of bringing patients to the center of clinical trials and development. How would a pharma marketing conference apply to our R&D work?

Some sessions left me wanting more, as several of the “digital is important” and “you better get mobile” sessions didn’t go deep enough for my tastes.

Still, there were patient-focused sessions that inspire, and sessions that struck chords that continue to resonate. And, I was able to meet plenty of interesting people.

Below are my “Top 5″ experiences from the ePharma Summit, in no particular order.

1) Social Media for Pharma: A Match Made in Heaven or Hell?  

For me, the best sessions are those where patients speak. This particular panel was made up of seasoned, digital health activists, ready to share their perspective on how pharma can better engage with them in the digital space. Patients are ready and willing. The ball is in pharma’s court.

A question posed to the panel about what pharma should do resulted in simple, insightful response:

Panelists included:

2) Meeting John Mack, @PharmaGuy

John Mack is the editor and publisher of the Pharma Marketing News and also produces regular thought-provoking content on his Pharma Marketing Blog. John is a marketing guy, but a quick read of his blog shows he has broader insight into the pharma industry, including R&D.

John interviewed us for his post OMG, LCOI! Open Source Pharma: Creative Commons Coming To Pharma and invited us to join him on his Pharma Marketing Talk Interviews with Innovators radio show TransCelerating and Crowdsourcing Pharma R&D.

It was a great pleasure to meet John in person, as his unique voice serves to stimulate lively debate, challenge the industry to do better, and helps show where pharma makes a difference in lives.

3) WEGO Health

We’ve come to know a bit about WEGO Health by proxy, as a number of health activists we have connected with are members. But, we’ve had little direct contact with WEGO Health itself.  WEGO Health is a community of health activists, for health activists. They provide a number of services to meet the needs of those activists, and on their about page they discuss how they are funded:

WEGO Health funds its support for our network through transparent, community-vetted advertising and sponsorships from health companies: research, content development, education, events, conferences, distribution programs, ad networks, and more.

WEGO CEO Jack Barrette and I had some very interesting conversations about the potential for Lilly COI to engage with WEGO Health activists. I look forward to future conversations, as the notion of a community of health activists participating with Lilly COI to drive changes in drug development seem aligned with both of our  visions.

4) Patient Centricity… A Cultural Transformation…Not Just Some Tactics!

Stephanie Schibell, Sanofi-Aventis, led us through her experience and described a cultural progression towards pharma being truly patient-centric.

Schibell’s perspective is that, ultimately, full C-suite integration drives the culture, with score cards, HR decisions, corporate mission/vision and objectives aligned to patient-centricity. It stuck with me when she shared that, at Sanofi, failure is rewarded –  IF the effort was properly focused on the patient.

5) Next Generation Content & Its Promise for Improved Health Outcomes 

Craig A. DeLarge of Merck is a highly credentialed marketeer. But his credentials are not what make him stand out. It is his easy and engaging style that makes you want to listen. Combine that with a compelling presentation about what the future holds, and his session is one that sticks with me.

His message, on the surface, is simple. Good content is about telling stories and playing games. It’s a lot harder than it sounds, but, ultimately it’s what people will respond to.  Expand the slideshare to full screen to see the infographic Craig made to support his talk.

You can watch Craig’s ePharma presentation here.

In conclusion, this marketing summit wasn’t an exact fit to Lilly COI’s mission, but I was able to gather some valuable perspective and make some great connections that will serve us well in the near future.

Why 23andMe Is About More Than You And Me 4

Clinical Trials, Data Management, LCOI • Tags: , , , ,

Advances in computational science and biology enable us to understand ourselves in ways that we could not just a few years ago.  Co-founded in 2006 by Anne Wojcicki, wife of Google co-founder Sergey Brin, 23andMe has emerged in the digital age to provide a view of our personal genetics - all for less than $100!

23andMe is evidence of Moore’s Law at work, and, in addition to giving unprecedented insight into our personal genome, efforts like 23andMe have innovative potential to change the way drugs are found and developed.

Thanks to Moore’s law, the cost per Human Genome is falling rapidly. More…

In NYC for the ePharma Summit Reply

LCOI • Tags:

ePharma Summit

Ever since the New Year started, I’ve been looking forward to the ePharma Summit, beginning today  here in New York City.

This digital marketing conference provides keynotes, breakout sessions and in-person opportunities to connect pharma with it’s various stakeholders – including physicians, consumers, health plans, caregivers and digital health activists.

I’m here to meet interesting people and to gain some knowledge. My particular interest is in learning more about ways to connect in the digital world – but with purpose to engage patients as partners in clinical drug development (clinical trials).

If you are curious about our efforts at Lilly Clinical Open Innovation, please feel free to browse this site and follow us on Twitter @Lilly_COI.  I look forward to meeting you!