What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our ongoing blog series “A Day in the Life,” which features PatientsLikeMe employees from different departments.  Today we’d like to introduce you to David Blaser, PharmD, a registered pharmacist who decided to trade his white lab coat for the more casual dress of the startup world in early 2011.  Find out what drew him to PatientsLikeMe, how his pharmacy background factors into his work and more.

1.  What led you to join PatientsLikeMe?

My journey had a few twists and turns, but now that I’m here, I can’t imagine working anywhere else.  I started studying pharmacy at Northeastern in 2003. Toward the end of my time there, I started to consider the career paths I could take and didn’t find any of the traditional ones particularly compelling. Maybe it was part of being young and naïve, but I continually was disappointed and perplexed by our healthcare system in the US. I felt like there had to be a better way.

Then I took a great class called Pharmacoeconomics and Health Outcomes. During this class, you take a medical question (e.g., Should I take drug A or drug B for this problem?) and develop computer models that take into account how it would affect the overall health of the population. It made perfect sense to me, and I didn’t understand why this wasn’t done in our system.

Fascinated with this area of medicine, I started a two-year research fellowship at UMass Medical School to learn more about it. During this time, I worked on lots of models examining conditions from insomnia to hepatitis C. Toward the end, I was looking at career opportunities in this area and got an alert about a posting on PatientsLikeMe. I was amazed how the system PatientsLikeMe had put together was even better than the models I was working on and how it could revolutionize our healthcare system. So I immediately contacted Paul Wicks, the head of R&D at PatientsLikeMe, and was able to set up an internship to work a few days a month on various projects. This eventually turned into a position on the Health Data Integrity Team with Christine Caligtan, Sally Okun and Shivani Bhargava.

On a more personal note, during this time my family and I went through the death of my brother due to substance abuse. This has had a deep impact on me and made me reflect on how can I help others avoid a similar fate. One of my long-term goals at PatientsLikeMe is to develop a better support community for other patients with substance abuse disorders.

2.  What’s surprised you the most about the health startup world?

The majority of my previous work experience was in pharmacies, which is one of the most heavily regulated professions. The amount of documentation, guidelines and laws you have to follow is staggering. When I started at PatientsLikeMe, I would find myself asking, where are our guidelines or what is the protocol?  I remember asking Co-Founder Jamie Heywood, and his response really changed my way of thinking.

He told me that no one else has ever tried to do what PatientsLikeMe is doing and there is no rule book. When you reflect on it, it is amazing to be part of the first company to try to accomplish our mission and develop a rule book for something that’s never been done.  Besides this, there is nothing better than having a job where you can have a beer in the office at the end of a stressful day and others join in with you.  (This is frowned upon in hospitals!)

3.  How does your doctoral and fellowship training inform your work?

While at Northeastern, I completed a doctor of pharmacy degree (PharmD). This gave me the knowledge needed to maintain our drug database and think about how medications should be added to our user profiles. There is still a lot to be done in this area, but I’m looking forward to improving it as we continue to develop our site.

While at UMass, I studied the different ways that ‘health’ can be measured. This seems like something that should be straightforward, but I found a whole new way of evaluating medicine and health. In theory, you give one group a drug and give another group a sugar pill and see who lives longer, but many patients don’t have the time for that. We need to get answers now, so how can we measure more intermediate outcomes to give us a clue about which medications work better? And what about medications that don’t make you live longer, but make your life better? It’s a difficult process that will never be perfect, but I think that the surveys and tools PatientsLikeMe has developed do an excellent job of measuring these things.

4.  What are the challenges of overseeing the wealth of drug information on the site?

People love sharing information! I recently talked with a member who entered information related to a hand injury they experienced while cutting some fruit, including every nerve and tendon that was injured and the different surgeries and operations to heal it. We love that people share such detailed information, but it can create some difficulty in designing profiles so that they are not overwhelming.

As for the drug information on the site, there are many ways that medications are formulated and taken that are difficult to show in the system. Medications can have different dosages, different formulations (e.g., creams, syrups, pills, injections), different schedules (e.g., take one daily, take one every six weeks, etc.), and they can come in a variety of combinations with other drugs. Not to mention the same medications may be available as a prescription drug, over-the-counter drug and supplement all at the same time. The medication databases that are available don’t always meet the needs of our users, but I do my best to put the right information and options in front of them.

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Interested in making a difference in patients’ lives?  Check out our Careers page to see our current job openings.  Headquartered in Cambridge, Massachusetts, PatientsLikeMe is looking for a Senior Visual Designer, Client Services Program Director, HEOR Research Scientist and more at the moment.

“Big data” is being discussed in the media quite a bit these days.  But what exactly is it?

Generally speaking, it’s a data set that’s extremely large and complex, thus requiring advanced technology to turn it into meaningful insights.  Yet there’s a good reason to try to collect and interpret it.  Simply put, big data can reveal correlations and trends that you couldn’t spot otherwise.  As a result, it has the potential to greatly enhance our understanding of disease, crime, traffic, economics and more.

At PatientsLikeMe, where more than 155,000 members are sharing data on their symptoms, treatments and conditions, we’re a perfect example of big data in action.  That’s why our team is constantly working on developing the tools needed for you and fellow members to learn from the data that you’re all sharing about your condition(s).  Ultimately, our goal is to empower you with the real-world knowledge and big data needed to make informed decisions and achieve the best health outcomes possible.

Want to learn more about the big data movement?  Check out this roundup of recent articles discussing how big data is poised to transform the health care industry:

Big Changes Are Ahead for the Health Care Industry, Courtesy of Big Data
Fast Company, June 18, 2012

Big Data Can Save Health Care—But at What Cost to Privacy?
The Atlantic Weekly, May 25, 2012

The Health Care Industry Turns to Big Data
BusinessWeek, May 17, 2012

Health Care Is Next Frontier for Big Data
Wall Street Journal, January 19, 2012

What do you think about the excitement surrounding big data?

“Patients are giving us their data, and we need to honor that by doing something that advances their disease, their cause, their power in the world.” – Jamie Heywood

This week marks the fourth and final installment of our latest video series, which explores what the recent changes at PatientsLikeMe mean for you as well as the entire medical establishment. (Missed the first three interviews? Catch up on what PatientsLikeMe executives Ben Heywood, David S. Williams III and Paul Wicks had to say.)

In today’s video, PatientsLikeMe Co-Founder and Chairman Jamie Heywood talks about the next steps in realizing the goal of PatientsLikeMe: to help all patients determine how they can affect their health outcomes and live the longest, most productive lives possible. What will it take to do that? Tune in to hear his vision of how healthcare could evolve as quickly as technology, provided that the concept of shared data is fully embraced.

To keep up with all PatientsLikeMe videos, subscribe to our YouTube channel today.

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.

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.

As 2009 comes to an end, we want to take this opportunity to thank all of our members, partners and general fans for another great year.   Here’s a recap of some of the exciting happenings at PatientsLikeMe these past 12 months.  Wishing you all a Happy New Year!

Community Milestones
This year, the 15+ disease communities at PatientsLikeMe became an online home to more than 50,000 members.   The fibromyalgia community was expanded this past fall to include patients with chronic fatigue syndrome, and we announced a new community scheduled to launch early next year for people with epilepsy.  In addition to celebrating our communities’ awareness days and months within the site and right here on the blog (including Fibromyalgia Awareness Day, MS and PD Awareness Months, National HIV Testing Day and World AIDS Day), many of our members also participated on PatientsLikeMe teams in walk/run efforts to raise awareness and money in the name of their disease.  Congrats to the 40+ teams walking at events to support non-profit organizations like ALS Association, National MS Society, NAMI, Parkinson’s Alliance, APDA, and the MS Society of Canada. The real-time sharing and learning happening on PatientsLikeMe was also highlighted in the report series called The Patient Voice (starting with inpatient therapy for people with Mood conditions).  Check out highlights from all these programs on these videos from the Fibromyalgia, Parkinson’s, Multiple Sclerosis and Mood communities.

Many of our members have also become fans of PatientsLikeMe on Facebook.  Here are a few quotes posted to our Facebook page in ’09:

“I find this site so beneficial in looking for the tools to cope with the disease. People post research and real-life patient experiences of current trials and treatments. Hope is a major focus of PLM and I encourage others to join. We are strong in numbers and we have a voice.”

“PLM is a wonderful way to express what and how to live with this disease. It has changed my life for the better, have met wonderful individuals and we have shared, cried and grown by reaching out and expressing from our hearts, have made wonderful friends and have learned so much.”

Research Updates
If you haven’t checked out our research page or subscribed to Google Scholar alerts (92 articles referred to us in 2009!), here’s what you’ve been missing…

This year our ever-growing research team continued their analysis of the real-world data being shared by patients like you.  Awarded the inaugural JMIR award at Medicine 2.0, the PatientsLikeMe research team published pieces on compulsive gambling in patients with Parkinson’s disease in Movement Disorders, expanding the gold standard rating scale in advanced ALS in European Journal of Neurology, and “The power of social networking in medicine” in the highly respected journal Nature Biotechnology.

Throughout the year, the team has also shared insights via videos (like this series on the history of ALS or a recap of a study on the antidepressant Amitriptyline) and various presentations (such as an overview of our work at the at Eurordis AGM in Athens and updates on our lithium study at the International ALS/MND Symposium).  In addition to working on the development of our new communities, the team took additional steps to incorporate genetics into the PatientsLikeMe platform.  By participating in new partner studies (such as 23andMe and NEALS) and utilizing new product upgrades, including the launch of the Genetic Search Engine, patients are learning more about their condition and coming closer to answering the question:  “Given my status, what is the best outcome I can expect to achieve, and how do I get there?”

Keep your eyes out for more to come in 2010 as our R&D team rolls out more insights and outcomes measurements (like the Quality of Life scale in HIV), more improvements to the PatientsLikeMe platform, and cutting edge research in the peer-reviewed scientific literature.

The Business Side
As Ben said in a recent blog post, “we can’t have a business without you [the patient] and our communities can’t exist to help patients without a business.”  Throughout the year, the PatientsLikeMe executive team traveled around the world to present to industry partners, researchers, healthcare professionals and government leaders about the power of real-world patient data-sharing.  Here are some highlights from ’09:

• Partnerships: Earlier 2009, PatientsLikeMe announced partnerships with biopharma leader UCB to launch an epilepsy community next year and personal genomics company 23andMe to help people with Parkinson’s.

• Government: Piloted in our MS community this year, PatientsLikeMe members now have the ability to voluntarily report adverse events directly to the FDA; in fact, Jamie recently presented about adverse event reporting at an open FDA hearing on the “Promotion of FDA-Regulated Medical Products Using the Internet and Social Media Tools.”  PatientsLikeMe was also one of the collaborating organizations responsible for writing the Declaration of Health Data Rights and launching HealthDataRights.org this past June.  Finally, Jamie testified before the National Committee for Health and Vital Statistics, and gave an exciting rapid-fire presentation on the future of medicine at the Gov 2.0 Summit.

• Innovation: As a leader in Health 2.0, PatientsLikeMe executives are often asked to speak at various industry events.  Check out photos of Ben speaking at The National Summit and stay tuned for videos from Jamie’s presentation at TEDMED and David’s presentation at Bil:Pil.  You can also tune in to our live event tweets on the PatientsLikeMe Twitter account in 2010.

• Media Highlights: PatientLikeMe members, data and executives were also featured in media mentions throughout 2009, including WIRED, Forbes, U.S. News & World Report, Fox Business Live, Newsweek, New York Times, as well as Seed magazine, Nature Biotechnology and Neurology Today.

Happy New Year!
- The PatientsLikeMe Team