A few nights ago, I was honored to give a keynote at the second Health 2.0 Northeast conference held right here in our Cambridge, MA backyard. It’s exciting to see old friends and new emerging start-ups coming together to try and make a dent in the $2 trillion industry that is healthcare in the U.S. In the world of Health 2.0, we have a lot of great opportunities to impact healthcare in a positive way, including shaking things up and putting patients back at the center. With so many new and promising companies emerging in the space (many in attendance at the Boston event), we have to start thinking about what happens next. How can we really make change, and what changes need to be made?
I believe we, as the eHealth community, need to focus on two major goals: 1) solve patients’ problems, and 2) create business models that allow us to do #1. The PatientsLikeMe business model is straightforward. We build online communities where patients share structured information about their disease to help themselves and others. In turn, we make money by selling that data. We are open with our patients about how and why we sell this data (and specifically what data we sell). They understand this exchange and they’re all for it. “Sell, sell, sell” someone recently wrote in a discussion about our business model. Why? Because they know our goal in selling is to help pharmaceuticals companies, medical device companies, healthcare providers, and others in the industry learn more about patients. We’re giving those companies the kind of information that can help improve the products/services they’re creating for patients.
I don’t want to prognosticate about what types of business models will work for all Health 2.0 companies as the industry evolves (because, ultimately, this is an evolution). It’s up to each company to figure that out. I do believe that there’s no wrong path when you keep both those goals in your sights. Help patients, and create business models to do that. Moving forward as a company and as an industry, that’s exactly what we need to do. Now let’s get back to work…
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PatientsLikeMe has the potential to be a great resource for conditions that potentially could be treated by pharmaceuticals.
However, its business model — financial support from drug companies and their ilk — leads it into a conflict of interest. For example, patients desperately need a way to collect reports of adverse effects from medications, a responsibility shirked by the FDA and subverted by the drug companies. Would PatientsLikeMe lend its platform to patient communities that have been harmed by drugs, such as those suffering from antidepressant withdrawal syndrome? It seem unlikely, since documentation of iatrogenic conditions might affect drug sales and, therefore, be frowned upon by PatientsLikeMe’s sponsors.
Would PatientsLikeMe lends its platform to tracking remedies that are not profitable for drug companies, such as supplements or exercise?
Because of this conflict of interest, PatientsLikeMe may serve some patient communities — those to whom the drug companies might eventually sell drugs — but will ignore others — those who will not be drug company customers.
It is unfortunate that an enterprise started with such humane intentions is contaminated, as is so much of medicine, by greed for drug company money.
Altostrata,
Thank you for your comment. I saw one that you left on our Openness Philosophy post. You are interested in antidepressant withdrawal syndrome. Perhaps it makes sense for you to join the site and add that as a symptom. Then anyone else experiencing it will be able to add it.
In addition, we most certainly collect adverse event data and we’re in the process of working with the FDA to send that data to them directly.
Our patients’ trust is of utmost importance to us. We are not driven by the whims of pharmaceutical companies. We respond to patient needs first as is discussed in our core values. We believe, however, that pharma companies are investing billions of dollars in many diseases and the patient voice must be heard in order for them to bring better products to market.
This is what Openness is all about to PatientsLikeMe. I welcome you to join our Mood Conditions community and find other patients like you.
Best,
David
Co-Founding Executive
Head of Marketing and Business Development
David,
How about adding a software feature within each community where patients can submit the necessary information so that adverse events can be reported properly?
Or how about strongly advertising that patients can and should report adverse events to the FDA using MedWatch – https://www.accessdata.fda.gov/scripts/medwatch/medwatch-online.htm ?
Just yesterday, I read an account of a MS patient who experienced difficulty tapering off an anti-depressant. That patient would not likely be a member of the Mood community, but the issue of withdrawal is still there.
Lisa,
Thanks for the comment. We are working on our AE reporting feature which will be live in January 2009. We certainly recognize the importance!
Patients will have the opportunity to submit AEs and we will be sending the information directly to the FDA.
DSW
First of all, THANK YOU! and your co-founder and absolutely EVERYONE that works with you. I have been searching and praying for people like you for the last 10 years.
I live in Washington, D.C. I am a two time stroke survivor. Strokes, diabetes, heart disease, schizophrenia and perhaps other diseases such as alzheimers affect members of my family on my mother’s and father’s side and my deceased husband’s family on both sides. We are a family of Anglo Saxons, African Americans, Cubans, Mexican, American Indian, and West Indian desent.
I left home (Martinsville, Va.) in 1967 to attend Howard University in Washington, DC to become a pharmacist. Needless to say, I worked as a pharmacy technician for 20 years in the retail, nursing home and inpatient pharmacy hospital environment.
I became degreed in information technology in the late 90’s. I am very much a supporter of open source technology with emphasis on Eclipse, Ruby on Rails and now embracing the social networking technologies.
You are doing what I have dreamed of, unfortunately in DC it is a struggle to penetrate the barriers of the medical community and research scientists because of the “status” personna that so many possess. But thanks be to God that groups such as Medtech exist. Because I was reading their newsletter, I decided to follow up on their lead to you.
I will join your efforts. Again, thank you all. Oh, stroke’s victory alliance is my effort to combat the notion that stroke survivors are victims. It is a group for patients to share their experiences. Your group has inspired me to revitalize my effort to bring the website back to an active state. This past year I only paid the hosting site’s domain name service to keep the dream of patient expression for stroke patients alive.
Patient rights is a convenient way to also allow a broken healthcare system to avoid total patient care and compassion and it sticks a finger in the eye of the oath that licensed professional healthcare providers (doctors, nurses, pharmacists, etc.) take before they begin their practice in earnest. Again thank you.