The Value of Openness: The PatientsLikeMe Blog

Why does it feel like “second nature” for PatientsLikeMe to create innovative partnerships with nonprofits?   Nonprofit organizations are dedicated and centered around putting patients first - a concept that’s near and dear to us too.  In 2010, we focused on refining our nonprofit partnerships to bring more events and programs to patients, both online and off.  As you know from our blog last week, more patients like you sharing data on PatientsLikeMe leads to more learning and we are thankful to our nonprofit partners for helping us spread the word to bring in more patients.  Additionally, the more patients like you who know about and participate in nonprofit events and programs, the more funds raised for your research and awareness of your particular disease.

Below is a video and some details about how we worked with our nonprofit partners in 2010:

• We worked closely this year with the Myelin Repair Foundation on two of their new initiatives: Where are the Cures? and Breakthrough to Cures. We offered you a chance to ask questions and comment on their groundbreaking Patient Manifesto in our hosted forum, and blogged about their innovative brainstorming game designed to spark conversation about accelerating the pace of research.
• With the launch of our Transplants Community, PatientsLikeMe developed a special relationship with the New England chapter of the National Kidney Foundation. Lori Scanlon, Chris Fidyk, and I joined the staff and a team of transplant recipients, donors and their families to spread the word about PatientsLikeMe at the 2010 US Transplant Games in Madison, WI.  We hosted a booth at the Expo and were blown away by the spirit of the Games.  Thank you team PatientsLikeMe!
• There was no shortage of spirit at the Parkinson’s Unity Walk this year at Central Park in New York City.  Lori Scanlon and I met the PatientsLikeMe team walking to raise awareness and funds for The Parkinson’s Alliance.  You can meet some of them through this video created by Aaron Fleishman.  We were amazed by the enthusiasm and determination of the thousands of patients attending the walk with their friends and families.
• Nonprofit partner National MS Society (NMSS) of Greater New England worked hard this year to spread the word about PatientsLikeMeInMotion^TM to its patients - and you responded.  PatientsLikeMe teams increased sevenfold at their events and you helped raise an extra $2500 for NMSS.
• In addition, we talked about the Accelerated Cure Project’s repository for MS and NMO patients and talked about a number of awareness months/days, including most recently Worlds AIDS Day, Epilepsy Awareness Month, and Mental Health Awareness Week.

Stay tuned for exciting new programs in 2011 for you and your favorite nonprofit organizations. Creating exciting partnerships with nonprofits continues to be at the forefront in 2011 and we’re looking forward to launching new initiatives throughout the year.

Share your thoughts in an innovative online event
with our partner Myelin Repair Foundation.

Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same spirit of openness, The Myelin Repair Foundation (MRF) has recently announced a new collaborative event.

This fall MRF is inviting scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry to two online “idea sourcing” events called “Breakthroughs to Cures”. These events are designed to explore creative ways to accelerate the pace of medical research and shorten the time to market for new medicines for all diseases.

The two events will take place respectively on October 7-8 and November 9-10  and there will be as many as 600 individuals from a wide range of backgrounds in online conversation threads that are expected to identify new strategies for accelerating research.  Here is a chance for patients to come to the table, contribute your ideas, your experiences with illness, and your sense of urgency to the discussion.  If you’d like to learn more and register for the events, visit “Breakthroughs to Cures”.

At PatientsLikeMe, we believe that real world data sharing helps drive research, helps patients make treatment decisions, and improves patient relationship with doctors.  The results from our user survey indicate that many members of PatientsLikeMe agree the site has helped them to understand side effects of their treatments and has helped them find another patient with experience of taking a specific treatment for their condition.  In fact, 65% of patients feel they are more involved in treatment decisions because of what they learned on PatientsLikeMe.

We believe, given this power, patients have the ability to affect a huge change in the medical system.  Make your voice heard by participating in one or both of these unique online events.

It’s your data, your ideas, your experience, your future - share on.

PatientsLikeMe partner, Myelin Repair Foundation (MRF), is a nonprofit organization devoted to reducing the time it takes to discover and develop treatments for multiple sclerosis (MS) patients.  Recently, the MRF launched a campaign called “Where are the Cures?” - a site dedicated to a greater understanding of the barriers slowing the discovery and development of new patient treatments in all diseases.  PatientsLikeMe co-founder Jamie Heywood asked Scott Johnson, President and Founder of MRF, about the campaign.

	(Jamie) What’s the big idea behind Where are the Cures?
	(Scott) The big idea? Finding a way or ways to accelerate the development of new patient treatments.Developing new medicines or treatments for complex diseases is extraordinarily difficult. But it is not impossible and it should be happening at a faster rate than it has been. I believe the single most rate-limiting factor is the failure to move promising scientific discoveries made in academic laboratories into the commercial development pipeline.The problem is fairly simple. On the front end of the value chain, academic laboratories are spending upwards of $40 billion a year in government and non-profit dollars to make basic scientific discoveries that may be potential drug targets. On the back end, the pharma industry is facing a crisis of grand proportion as a result of its dwindling pipeline. The obvious question is why isn’t pharma reaching into this vast pool of potential drug targets to fill their pipeline? Because between the two is what is known in the industry as the Valley of Death.I think two things primarily contribute to this disconnect. First, most biological discoveries made in academic labs are not patented. Without the clear ownership that patent protection provides, biopharma is unwilling to make a multimillion investment in drug development. Second, there is little to no funding available to conduct the validation studies necessary to fully demonstrate that the basic scientific discoveries made in academic laboratories will truly and safely impact the disease state in humans. Without this validation, again, the perceived risk to pharma is too high.Knowing this, it’s shouldn’t be surprising that so few treatments for difficult diseases are coming to market.So how do we capitalize on the promising discoveries made in universities and feed that pipeline? We address those two problems: protecting the IP and funding validation studies.We are doing this at the Myelin Repair Foundation and it can be done in other medical research. But it requires an open mind and a set of shared incentives that puts the patients’ needs before other current incentives.
	(Jamie) As a part of the campaign, you launched The Patient’s Manifesto, a declaration that the medical research system is broken and a call for massive change across industries.  Why should a patient with life-changing condition sign it?
	(Scott) We created the manifesto because we wanted to bring attention to the problem and provide a venue where new ideas would be talked about. There is a lot of innovation going on in the industry but we have to find ways of sharing it. Why should patients sign the manifesto and encourage others to do the same? On the premise that the squeaky wheel gets oiled first, we think that we will be more successful at bringing public attention to this problem if there appears to be a significant groundswell of people who care. The millions of patients and their families living with chronic diseases are the most motivated to create change. There is no implied promise here. It’s all about building awareness and attracting attention in a way that will spur change.
	(Jamie) Both our organizations work to help let the patient voice be heard.  What do you think a patient’s role is in making our research system more efficient?
	(Scott) I think the entities that are best positioned to tackle the Valley of Death are the non-profit disease research foundations like the MRF. Their only motivation is improving the quality of life for patients. Because we are not driven by academia’s need to “publish or perish” or by pharma’s need to increase shareholder value, we have the freedom to move among and between the players in the value chain and facilitate the process on behalf of patients.  It is largely patients and their families who support these non-profit organizations and for their investments they have a right to ask for accountability. While investing in basic research is an absolutely essential part of the equation, it takes more than that to get a drug to market. Patients should be asking the organizations they support how they plan to actually accomplish that once the basic science is completed. I think as patients, we understand that this isn’t easy. But we don’t have to sit back and be satisfied with the status quo.
	(Jamie) No we don’t, Scott.  Thanks for talking with us about the campaign.  For those of you wondering, yes I’ve signed The Patient Manifesto.  Have you?  Go to www.wherearethecures.org for more information.

At PatientsLikeMe, our Core Values drive all of our business processes including selection of partners. We are proud to announce our three newest partnerships which include both nonprofit and academic institutions. Note: At all times, our members can access information about what we do with their data, how we make money, and who is partnering with us.

Accelerated Cure Project for Multiple Sclerosis - a national nonprofit organization dedicated to curing MS by determining its causes.

Myelin Repair Foundation - the only non-profit medical research foundation solely focused on identifying myelin repair drug targets that will lead to treatments for multiple sclerosis.

Penn State Milton S. Hershey Medical Center - one of the leading research institutions in the field, particularly around issues of quality of life (QOL) for patients suffering from ALS.

What do these partnerships mean? Together, we can open the healthcare dialogue by sharing and learning from one another. As we say in our Openness Philosophy, “we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.