2 posts tagged “health social networking”

Success is Putting Patients First

Posted September 10th, 2010 by

Without looking too far forward I think we all can see a day where patients have the ability to see how different decisions they make directly impact their health outcomes. I don’t mean in an abstract sense, but rather in a practical way that can change day-to-day decisions about nutrition, exercise, medication choices, and doctor visits.

bizdevcorevalues

Aligning Patients and Industry is Possible

Calling the path to getting to that nirvana “the easy part” would be insane until you compare it to trying to create a thriving and responsible business out of this endeavor. PatientsLikeMe is attempting to do just that. The key is being responsible in the decisions we make as we move forward. We must not only adhere to our core values, but also select the “right” partners.

Our partnership objectives are to work with companies dedicated to optimizing health outcomes through the use of real-world, patient-reported data. This means that companies have to value patient experiences, believe that patients understand their health decisions, and regard patients as partners in obtaining the shared goal of improving outcomes.

No Race Car

As easy as that sounds, the devil is in the details. The revenue model of choice for social media is advertising; and as we’ve indicated many times before, there is no advertising on PatientsLikeMe. Our choice is to maintain the sanctity of our user experience without turning our site into a “race car.” This leaves us the option of selling the data that patients provide to us so that stakeholders in health can learn from their experiences.

How Can We Learn?

Data is the key to learning. Translating that data into actionable information for companies that are trying to maximize their profits while still keeping the patients’ interests at heart has been our biggest business challenge yet. Of course, all companies insist that they’re in business to help patients, but in all honesty, there are clear leaders in that regard—organizations that act on the ideals of the company revering their core values as more than rhetoric for annual reports.

We learn as much from these companies during the partnership development process as they learn from us. Should we work with them? Will this company value the same things that we value? Can the patients really be first in their decision-making when faced with tough business decisions? We evaluate potential partners on these parameters as well as their ability to create positive change for patients quickly.

The Goal: Measure Everything For Poeple’s and Industry’s Benefit

One way we measure this ability is how much data is fed back to patients based on partner research conducted on our site. Although some of that information is proprietary, companies that share some interesting nuggets with the patients that supplied the data create a sense of goodwill and encourage greater participation in further studies. Patients feel like they have a direct impact on companies interested in their disease and clearly know that their voice has been heard. To us, that’s what the business of healthcare must be: a responsible dialog between patients and industry focused on serving unmet needs today and creating better treatments and cures for tomorrow.

We aspire to these goals and practice them daily. We continue to turn away business opportunities that don’t feel right. We do this for the patients who put their trust in us; that if we collect the best data on the patient experience, put the patient squarely in the center of their health decisions, and provide unprecedented insight into this experience for industry, PatientsLikeMe will be wildly successful. Our success is the patient’s success.

PatientsLikeMe member dwilliams


PatientsLikeMe sponsors MS Challenge Walk on Cape Cod

Posted September 19th, 2008 by

PatientsLikeMe was recently one of the sponsors for the 2008 MS Challenge Walk on Cape Cod, a three-day, 50-mile event held on September 5-7, 2008. More than 620 walkers participated, each raising a Walkers finishing the Cape Cod Walk minimum of $1,500.  Overall the event raised close to $1.4 million to benefit Multiple Sclerosis (MS) education, support, advocacy and research.

The walkers persevered through some very nasty weather during parts of the walk.  Fortunately, the last day was a spectacular early Fall day in New England, as the event ended with the parade of walkers onto the Hyannis common.

We had the chance to talk to  many participants over the course of the three days, and showed them how PatientsLikeMe can help them share their health data and experiences and learn from others. We showed them a public member’s profile to demonstrate how they could use enter treatments, symptoms and outcomes and chart the course of their disease over time.  They were also very excited to see how this information is aggregated in our Treatment Reports.  Whether they wanted to share their positive experiences with a specific treatment, or were looking for more information about a newly considered treatment, walkers definitely saw great value in our treatment report/evaluation system.

This event is also where our MS quilt made its public debut.  The quilt, PatientsLikeMe quiltmade up of individual squares created by many of our charter MS members, brings home the support aspects of the site.   It highlights some of the people who have helped create and grow the site into one of the largest and most vibrant MS communities online today, with more than 7,600 members from around the world.  The process of actually creating the quilt also represents what PatientsLikeMe is about:  pulling together patients’ experiences and data in a way that allows both the individual and comprehensive view of the disease.

This was an inspirational event. It was rewarding to learn first-hand from people about the challenges they face dealing with MS, and to offer them a resource where they can find and learn from others going through similar challenges.

PatientsLikeMe member thorgan