3 posts tagged “pharma”

Treat Us Right: The Promise of Patient-Centric Healthcare

Posted February 11th, 2011 by

community-developmentAt PatientsLikeMe, we strive to put the interests of you, the patient, first in everything we do.  After all, you are the customers of the healthcare industry, and you deserve to have a say about the products and services created for you.

Unfortunately, your needs and opinions often haven’t had the influence on the decision-making processes of insurance companies and pharmaceutical manufacturers.  Medical providers have often underserved you in favor of competing interests and more revenue.

The good news is times are changing.  Your voice, the patient voice, is coming to the forefront, where it should be.  Every day new companies approach us asking, “How can I connect with patients?  I need to know what they think and what they’re feeling.  I want to improve their health outcomes.”  These are the partners we want to work with because they are committed to using your insights to change the very nature of healthcare.  And their numbers are growing.

Here are two examples of how you have already impacted their decisions:

  • How do we make this treatment easy for patients to use? A pharmaceutical manufacturer approached us with several options for a new drug’s packaging.  Over 650 of you spoke up in a survey, picking the most user-friendly choice based on your experience.  Guess which packaging the pharmaceutical company went with?  The one the majority of you liked.
  • How do we help patients distinguish their symptoms? Another pharmaceutical company wanted to help patients like you understand your symptoms better so you could seek appropriate treatment.  By partnering with PatientsLikeMe, they found the solution.  58% (n=221) of patients like you surveyed said that the tools developed by PatientsLikeMe helped you better understand your symptoms and outcomes.  That insight has led to even more projects – and they really want to hear from you now!

Thanks to all of you who gave input in these surveys.  There will be more opportunities to be heard soon, so keep it up.  The world is finally listening!

PatientsLikeMe member AMGraham


Drug Safety: It’s About More Than Just Compliance

Posted September 30th, 2010 by

pillsEngaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences.

When I recently spoke before the FDA, we highlighted how our pharmaceutical partners are taking a leadership role by navigating through these issues. In so doing, our partners are learning about real world experiences of patients and how to meet their adverse event reporting responsibilities in the PatientsLikeMe Epilepsy, Organ Transplant and Multiple Sclerosis communities.

“…as the FDA contemplates the Internet and social media as an emerging source of drug safety data, it is essential to consider what characteristics distinguish a social media site as being capable of contributing to drug safety in a meaningful, computable and quantifiable manner.”

Meaningful, computable and quantifiable are three words that underscore all that we do at PatientsLikeMe. This includes the creation of our patient safety program. Early on, we approached patient safety proactively with a pilot program in our Multiple Sclerosis Community. Launched in 2009, this program allows patients to voluntarily report adverse events that funnel to the FDA’s MedWatch system. Our system automatically pulls relevant data from the patient’s existing profile into an FDA 3500 form, dramatically reducing form completion time.

Going beyond that in areas where we work deeply with our pharma clients, we developed an integrated and comprehensive drug safety reporting platform that monitors patient data and free-text for potential adverse events. This data is then medically curated into standard MedDRA terminology and submitted electronically to meet regulatory timelines and reporting criteria. Of note, PatientsLikeMe is the only online health data platform in social media that has passed multiple drug safety compliance audits.

The reality today is that patients are sharing their real-life experiences with post-marketed drugs online. By using structured data collection tools within the PatientsLikeMe platform overseen by a drug safety professional, industry partners can improve patient safety.

This is about more than just compliance, though. We believe it’s about leadership – patients and pharma working together in new ways. Listening – to understand the positive and negative patient experience – is the right step in developing a trusted relationship. And this trust-based relationship is the only foundation upon which to build your social media strategy.

PatientsLikeMe member jamie


Extending Boston’s Commitment to Organ Transplantation

Posted August 18th, 2010 by

Attending the National Kidney Foundation’s 2010 U.S. Transplant Games was an eye-opening experience.  And it wasn’t just the thousands of transplant recipients, living donors, and donor families who made the event so memorable.  It was the passionate commitment to transplantation by so many different individuals and organizations.

wallDozens of nonprofits, donor and support groups, and pharmaceutical manufacturers descended upon Madison, WI to meet those touched by transplantation and celebrate their stories.  An incredible number and variety of resources were offered by these organizations to drive donor awareness, support the needs of transplant recipients, and facilitate connections with others (see the photo of Novartis’ “Wall of Inspiration”).  The simple act of pin trading between two people often caused them to open up about their transplantation experience and what brought them to the Games.

As the founding sponsor of the Games two decades ago, Novartis continued to serve as the event’s lead sponsor and pledged its continued support in the future.  Other noteworthy pharmaceutical sponsors of the Games included Pfizer, Bristol-Myers Squibb, Astellas, and Genentech.  Together with Novartis, these organizations have invested many years and many millions of dollars developing the immunosuppressants that transplant recipients need to maintain the health of their organs.

Novartis also demonstrated its commitment to organ recipients last year by partnering with PatientsLikeMe to develop the Transplants Community.  Novartis wants to learn from this Community – just as patients learn from one another – what challenges patients face and what unmet needs can be addressed.  By partnering with patient-centric organizations like Novartis, PatientsLikeMe fulfills its mission of improving patients’ lives by discovering important research insights through shared patient data.

PatientsLikeMe is headquartered just outside Boston, which is coincidentally the city where the first successful kidney transplantation occurred more than 50 years ago.  We are proud to extend Boston’s long-standing commitment to organ candidates and recipients.

PatientsLikeMe member cfidyk