2 posts tagged “dwilliams”

The Choices Patients Like You – and Like My Mother – Face

Posted February 14th, 2011 by

Patients like you with life-changing conditions have to make choices every day, just like anyone else. These choices, however, typically have more at stake than how to RSVP to a party or even whether to walk away from an “underwater” home. For patients like you, your lives may be at stake.

I have watched my mother deal with three different types of cancers for more than 25 years, and the choices she had to make for me and my siblings to be successful were stark. As a single mother with a doctorate and two master’s degrees, she had to take jobs that paid less because cancer limited her energy. She took on enormous debt because she wouldn’t let her illness stop her from giving her children a private school education. Those choices started from physical and emotional hardship, then led to economic hardship.

Patients like you – and like my mother – have conditions you didn’t ask for, and your ability to keep a job and maintain economic stability isn’t just based on your talent or training, but also in your management of your conditions. Brought on by infection, age, genetic pre-disposition or unknown causes, these conditions factor into every choice, every decision—and in my mother’s case, which job to seek. We all make choices each day, but patients like you often have to choose between living well and just living.

One of the most important choices for patients like you is how to treat your disease. With your health care team, you try to make the best choice with the given information. The problem is information is scarce, untrustworthy or impersonal. That’s right, impersonal. What is a miracle treatment for one person could land another in the hospital. At PatientsLikeMe, we try to shine light on the information that can help each of you reach your best outcome. This is why we don’t just provide aggregate information, but allow you to access the profile of a person who is taking a medication to see if that person is “like you.”

The figure below speaks to the choices patients like you have to make about your treatments in a world with imperfect information. The chart depicts thousands of patient evaluations of efficacy and tolerability among major therapies across our 22 represented conditions. What jumps out immediately? That treatments for HIV and Parkinson’s are both more effective and easily tolerated than others out there for other diseases. Hundreds of millions of dollars have been devoted to research in those areas, and it’s paid off. Many believe Parkinson’s has a cure in sight, and HIV has, in less than 30 years, become a manageable chronic condition rather than a death sentence.

Efficacy vs. Side Effects

But what if you have other conditions? You are clearly making a choice between efficacy of the medications and the side effects that come with them. While aggregated data is great for directional insight, PatientsLikeMe is designed to let you drill down deeper. You can ask each person taking the treatment how it works for him or her. Why? Like everyone, you trust people like yourself who are going through or have gone through the same experiences. Only patients with similar situations can give you specific insight into what tradeoffs need to be considered when potentially trying a new medication. How will it affect my sleep? Is there daytime fatigue or “down time”? Can I operate heavy machinery? Will this treatment impair my ability to work in my profession?

These are the questions many of you are asking. These are the choices you make every day. My mother made her choices and has lived to see the fruits of her sacrifice. If we at PatientsLikeMe are going to help each of you answer the question, “Given my status, what is the best outcome I can hope to achieve, and how do I get there?”, then we have to continue to show the benefits of openly sharing information with each other. We have to excel at illuminating the real-world efficacy and risks of all kinds of treatments, and we have to help you connect with patients like you in a way that you get personal answers to your questions.

The more data you choose to share, the more we can all make the world of treatment information less imperfect and more personal. Simply stated, we’re all in this together.

PatientsLikeMe member dwilliams


Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

Posted January 12th, 2011 by

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year.

Successes

1.  New Partnerships, New Communities

In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners.  UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community.  Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world.

As with all of our partnerships, we made sure the focus is on the patient experience.   For example, what are your perceptions about the medications you take?  How do you see these treatments impacting your quality of life?  Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes.

2.  Enhanced Services for Partners

When we create products and services for our corporate partners, it’s with a single objective:  to amplify the patient voice.  As a result, healthcare companies who wish to improve health outcomes have the information to improve their products and services accordingly.  In 2010, PatientsLikeMe further heightened the voice of patients by enhancing two existing products.

PatientsLikeMeListenTM and PatientsLikeMeLandscapeTM

screen-shot-2011-01-12-at-113913-amThese complementary services help measure both the frequency and sentiment of treatment discussions in our community forums.  In 2010, we added functionality that allows our partners to see a longitudinal comparative view of patient sentiment (using  PatientsLikeMeListenTM) as well as identify discussion topics that are rising within a forum (using PatientsLikeMeLandscapeTM ).  Both products help to elevate patient concerns and bring their importance and relevance to life for industry partners.

Challenges

As a for-profit health company that enables data sharing by patients, we knew we’d face our share of challenges.  2010 was no different.  Many groups, including patients, nonprofits, government and industry, had valid concerns about working with PatientsLikeMe because of our Openness Philosophy.

1.  Guidance on Industry Interaction with Social Media

One of the main (and valid) concerns our industry partners express is that the Food and Drug Administration has yet to deliver clear guidelines on how to interact with social media.  Dipping their collective toes into the social media wave pool is perceived as risky because the FDA levies severe penalties for companies attempting to directly sell to patients.

PatientsLikeMe has taken a leadership role in addressing this concern by further developing our PatientsLikeMeLeadersTM service. After investigating all privacy and regulatory conditions, PatientsLikeMe has created a fully compliant solution for direct industry-patient feedback in an online forum that we moderate.  Now you as patients will be heard directly by those making decisions on what treatments are developed and how they are introduced, while our partners can learn what patients like you want and need – without fear of non-compliance.

2.  Being Open About the Data Scraping Incident

In May 2010, we discovered that a major media monitoring company had created a patient account and automatically downloaded forum posts in order to add data to their sentiment analysis client service.  Not only is that a violation of our User Agreement (“You may not use any robot, spider, scraper, or other automated means to access the Site or content or services provided on the Site for any purposes.”), but it reduces the trust patients have with our site.

We dealt with this challenge openly by disclosing our discovery of this “data scraping incident” the day it occurred.  We sent a message informing all patient members, and about 200 patient members left the site as a result.  In October 2010, The Wall Street Journal included PatientsLikeMe in its special series on the benefits and risks of sharing health information online, with the practice of data scraping highlighted as a risk to patients.  We welcomed this article coverage and continue to engage with other leaders in this ongoing discussion.

Since our PatientsLikeMeListenTM product measures sentiment of discussions in our forums, we reminded our members about this similar service.  We will continue to inform and educate our members about how we conduct business so there are no surprises.

Summary

In 2010, we continued to grow our patient communities and further confirmed that the success of our business lies in aligning patient and industry interests.  In fact, we have recently been cited by the Board of Innovation as one of 10 Business Models That Rocked in 2010.

Because of the sensitivity of sharing health data online, however, we remain upfront, open and transparent about our business practices so that patients like you can be informed participants in your health, medical research and the development of effective treatments.  Happy 2011!

PatientsLikeMe member dwilliams