MTJ: What is the current focus of your company's business?
Heywood: The short answer is that our focus is on patients. PatientsLikeMe is an online community network that empowers patients with life-changing conditions to take control of their disease. We provide patients with the platform to share their real-world experiences by charting the course of their diseases, including treatments and outcomes. By sharing their information, patient members can also find and connect with a patient just like them. We believe in the “openness” of sharing healthcare information to empower patients, improve outcomes, and accelerate research. Today, PatientsLikeMe serves thousands of patients, caregivers, healthcare professionals and researchers across communities such as ALS (Lou Gehrig’s disease), Multiple Sclerosis (MS), Parkinson’s disease and HIV. While patients interact to help improve their outcomes, the data they provide helps researchers and the healthcare community-at-large learn more about how these diseases act in the real-world.

MTJ: How has this focus changed in the last 2 years?
Heywood: Two years ago, the company was just getting started and our focus was on creating a community for patients with ALS. My brother, Stephen, was diagnosed with ALS in 1999 at the age of 29 and my family’s experience with the disease was really the inspiration for founding PatientsLikeMe. The company was founded by myself, my brother Jamie, and our long-time friend, Jeff Cole. Early last year, we were ready to launch our first community for ALS patients, like Stephen. Now, our focus is extending this powerful platform to the thousands of patient communities that will benefit from this concept. In ALS, MS and Parkinson’s, we have an incredible repository of information that our patients continuously add to everyday, and are using to help manage their disease and improve their lives. We also know that we have what is essentially a large-scale real-world outcome study that will impact the work of researchers, healthcare professionals, and other industry organizations trying to treat these diseases.

MTJ: What are your current initiatives?
Heywood: After seeing the success of the ALS community, we realized that other disease areas could benefit from our shared approach to health information, especially those that don’t have a true standard of care or the course of the disease varies widely. So earlier this year we launched communities for patients with MS, Parkinson’s and HIV. We are also completing a very exciting new community for mood conditions--essentially an integrated depression, bi-polar, and anxiety community--that will launch early in 2008. How has your market segment changed over the last year? The market segment we are often placed in is the Health or Web 2.0 category. Today, we’re seeing more and more consumer-focused healthcare companies using Web 2.0 concepts. It really has the feel of the early Internet days where there were quite a few “early adopters” who started the movement. Specifically for PatientsLikeMe, we have “early adopter” patients and other members who understand the value of sharing their information, but there are many more patients out there who aren’t quite sure if sharing their information online is right for them. The healthcare industry is, at times, somewhat patriarchal, so it’s only natural that there would be some hesitancy about openly sharing data. We understand that. However, our experience so far with the communities we have launched is that there’s a trend toward people participating in this Health 2.0 revolution because the value far outweigh the risks; that’s both validating and exciting.

MTJ: What are the greatest challenges for your customers in adopting and implementing technology?
Heywood: Our customers are our patients, and patients have traditionally been told to keep their medical information private. This privacy stance is one of the biggest hurdles in our space when it comes to patients adopting the use of our technology. With regard to implementing our technology, we have an incredibly talented team who think about the user experience with every decision – I think that is the key to a great product. One of our strengths is making it very easy for our patients to turn their experiences into useful data that everyone can learn from.

MTJ: How are you helping your customers address these challenges?
Heywood: The privacy issue is something we address head on – one of our core values is transparency. Our website clearly states that, if you sign up to be a member of a PatientsLikeMe community, you’re agreeing to let other patients and community members view the medical information that you choose to input. We don’t require that they fill in everything. For example, a patient could choose not to enter his/her weight. However, we do encourage patients to share as much as possible so we can all learn from one another. Our openness philosophy is core to our mission, and we’re always going to be candid about it. We also tell patients exactly what we do with the data they enter - we share this data with our partners, such as researchers, pharmaceutical companies, and non-profits, so they can use it to improve the lives of patients.

MTJ: Describe your company's position in the industry with regard to the solutions you deliver.
Heywood: We’re not the first online community for patients, and we certainly won’t be the last. However, our focus on capturing the real-world outcomes of patients really sets us apart. By structuring this information in a way that makes it useful for our patients, clinicians, researchers, and industry partners, we’re really making an impact in our current disease communities, and will do the same as we enter new disease areas. We’re also committed to helping patients improve their patient-doctor communication. Our patients can download our “Doctor Visit Sheets,” which detail all of the symptom, treatment and outcome changes that they have entered in our system. This provides doctors and medical professionals with a complete perspective on the patient as a whole, including information not traditionally captured in medical records. The perspective of focusing wholly on the patients’ needs, while improving the patient-clinician interaction and engaging the research community, makes our communities a unique resource in the healthcare industry.

MTJ: What do you believe to be the state of the industry in terms of growth, maturity, and availability of viable products to address the technology needs of the medical community?
Heywood: We believe Health 2.0 technologies can bring significant change to the industry. However, healthcare is a very large industry with a lot of established players. There will be a lot of new technologies introduced in a very short span of time – and eventually there will be shake out, with those that truly address patients’ needs rising to the top. We’re already seeing products, like electronic health records, impacting the way the medical community shares information. The social networking aspect of Health 2.0 is where the patients get to drive that sharing in a very real way.

MTJ: What advice would you offer to organizations attempting to implement any technology project?
Heywood: Know that there will always be challenges to overcome (particularly if your technology is a “disrupter” in the market), but keep the faith. If you have a product that can really make a difference and provide value to your constituency, then go for it. Challenges can be overcome and perceptions can be changed over time.

  Benjamin Heywood Co-Founder, President and Director PatientsLikeMe Ben's experience spans a diverse set of operational areas including successful ventures in the medical device industry, the entertainment industry, and in speculative residential real estate development.

After graduating from the Massachusetts Institute of Technology (M.I.T.), Ben moved to Silicon Valley to work for Target Therapeutics, the leading designer and manufacturer of microcatheter-based products for the treatment of stroke. After significant involvement in both manufacturing and product design, Ben eventually moved into Business Development until Boston Scientific acquired the company for $1.3 billion. After receiving his M.B.A from the Anderson Graduate School of Management at UCLA, Ben channeled his creative energy working in the feature films industry both in production and script development.

In his most recent position as a Creative Executive at the film and television production company SideStreet Entertainment, he developed a romantic comedy starring Sharon Stone, which was bought by the company that produced My Big Fat Greek Wedding. He produced an award winning short film, Flush, and worked in both production and script development on numerous films.

Ben earned his Bachelor's degree in Mechanical Engineering from M.I.T and received his MBA from the UCLA Anderson Graduate School of Management.