60 results for “openness”

PatientsLikeMeOnCall™: “A Look Ahead” at Openness in Healthcare (Episode 4)

Posted April 15th, 2011 by

“I think we can see there are a lot of ways where openness can be powerful.  What’s necessary is to help facilitate openness and reduce the barriers to sharing medical information.” – Ben Heywood

PatientsLikeMe Co-Founder and President Ben Heywood

PatientsLikeMe Co-Founder Ben Heywood has blogged previously about openness and sharing – and how important they are for patients. In this edition of PatientsLikeMeOnCall, he talks about the progress we’ve made in achieving openness within the healthcare industry and his vision for the expansion of the patient voice.

How can we put patients back at the center of healthcare? What barriers do we need to break through so that patients like you can openly share your health information?  Ben answers these questions and more in the fourth and final episode of our “A Look Ahead” podcast series.

Tune in to Ben’s full interview here:

Did you miss any of the first three episodes?  Find them on our blog or iTunes page.

PatientsLikeMe member afleishman


PatientsLikeMe in Wall Street Journal: Transparency, Openness and Privacy (cont’d)

Posted October 11th, 2010 by

Journalist Julia Angwin of the Wall Street Journal just published an article describing how a major media monitoring company, Nielsen BuzzMetrics,  scraped our forum last Spring.  (See my previous blog post on the incident – “Transparency, Openness and Privacy”)

Julia’s piece includes details regarding how this incident happened, how we (and you) responded and more.  We are very excited about this article.  Having a rigorous debate about transparency, openness and privacy is critical to us achieving the trust we want to have with you, our patients.

What Nielsen did was clearly a violation of our User Agreement.  However, we believe this incident (and this article) have spurred an important ongoing discussion about what is right, just and appropriate regarding how companies operate in this new networked world.  As I said to Julia, this is a new frontier.  We also believe there’s a lot for everyone to learn from this experience, especially around how to put patients first.

Read Julia’s piece and tell us what you think.

PatientsLikeMe member bheywood


Will Openness Bring About a Breakthrough?

Posted September 16th, 2010 by

Share your thoughts in an innovative online event
with our partner Myelin Repair Foundation.
mrf-breakthroughs-sticker

Our Openness Philosophy is centered around the idea that patients sharing their real world health data allows for collaboration on a global scale; that it will accelerate new treatments; and that it can change our health care system.  In this same spirit of openness, The Myelin Repair Foundation (MRF) has recently announced a new collaborative event.

This fall MRF is inviting scientists, industry experts, patients, policy makers, and other big thinkers inside and outside of the medical research enterprise and health care industry to two online “idea sourcing” events called “Breakthroughs to Cures”. These events are designed to explore creative ways to accelerate the pace of medical research and shorten the time to market for new medicines for all diseases.

The two events will take place respectively on October 7-8 and November 9-10  and there will be as many as 600 individuals from a wide range of backgrounds in online conversation threads that are expected to identify new strategies for accelerating research.  Here is a chance for patients to come to the table, contribute your ideas, your experiences with illness, and your sense of urgency to the discussion.  If you’d like to learn more and register for the events, visit “Breakthroughs to Cures”.

At PatientsLikeMe, we believe that real world data sharing helps drive research, helps patients make treatment decisions, and improves patient relationship with doctors.  The results from our user survey indicate that many members of PatientsLikeMe agree the site has helped them to understand side effects of their treatments and has helped them find another patient with experience of taking a specific treatment for their condition.  In fact, 65% of patients feel they are more involved in treatment decisions because of what they learned on PatientsLikeMe.

We believe, given this power, patients have the ability to affect a huge change in the medical system.  Make your voice heard by participating in one or both of these unique online events.

It’s your data, your ideas, your experience, your future – share on.

PatientsLikeMe member mcotter


Transparency, Openness and Privacy

Posted May 20th, 2010 by

The following message was sent this morning to all members of PatientsLikeMe.  Please read what we have to say about openness, sharing and its privacy implications and join the conversation.

****

Dear PatientsLikeMe Members,

What are the privacy implications of sharing in this open, online community?  We talk a lot about this and, as a company, strive to be transparent about the risks and rewards to sharing here.  Two recent events have prompted me to reach out to all the members of PatientsLikeMe to ensure we all understand openness, sharing and its privacy implications.

The first event happened last month when a patient asked us to remove all the data on his/her profile from the system.  The member wrote:

“The reason I’m leaving is I feel I didn’t fully understand the privacy impact of having all my health information for practically anyone in the world to see.”

We rarely receive a request like this, but since receiving this one, I have thought about it every day.   We do not want anyone to be surprised by the impact of sharing data on PatientsLikeMe.  We believe in openness, but we also want people to knowingly make the choice to be open with their health information.

This brings me to the second event.  Recently, we suspended a user who registered as a patient in the Mood community.  This user was not a patient, but rather a computer program that scrapes (i.e. reads and stores) forum information.  Our system, which alerts us when an account has looked at too many posts or too many patient profiles within a specified time interval, detected the user.  We have verified the account was linked to a major media monitoring company, and we have since sent a cease and desist letter to its executives.

While this was not a security breach, it was a clear violation of our User Agreement (which expressly forbids this type of activity) and, more significantly, a violation of the community’s trust.  Your Account Information (e.g. your names and emails) was NOT in danger of being stolen.  It is likely that the forum information that was “scraped” would be sold as part of that company’s Internet monitoring product.  In fact, we sell a similar service, PatientsLikeMeListenTM, to our clients so they better understand the voice of the patient.

What does this all mean to you?  What can you do?

  1. We recognize that people write very personal things in the forum and often use real names.  In any growing network of tens of thousands of members, there is no way to ensure that information you share in the forum or on your profiles will not be read by others.  Know that the information you enter in our system is shared (unless we tell you it is private, like full name and email in your Account Information).  It can and will be read by other patients, the PatientsLikeMe team, researchers, and others that use PatientsLikeMe, including our partners with whom we share de-identified data.
  2. Please weigh the benefits of sharing and the amazing value you all create in helping each other versus the risks of people, unknown to you, reading your posts.  Your input helps PatientsLikeMe and our partners learn about your disease and make better products to meet your needs.
  3. Learn and understand why we value openness.  If you haven’t, please read the Read This! FAQ.  If you want to know how we make money, you can take a look at this FAQ or go to our Partners Page and know that we sell your data and insights (but not your identity) to our customers.
  4. Consider the value of being part of the PatientsLikeMe community and make the right risk decisions for yourself.  Together, we can really change the way diseases are treated and managed by putting you, the patients, in the center of healthcare.  We can hold companies accountable for the strengths and weaknesses of their products and also help make those products better – but that requires openness and that is your choice.

We welcome your comments and questions and we love feedback. This has been posted on our blog, which is a good place to dialogue, as is the forum.

On behalf of the entire PatientsLikeMe team, I want to thank you for being part of our communities and sharing your experiences.

Sincerely,
Ben Heywood
President and Co-founder, PatientsLikeMe

PatientsLikeMe member bheywood


Sharing, Openness…and Privacy?

Posted November 18th, 2009 by

Every so often, we sit down to try and make our business objectives clearer to our patient communities.  Why?  Well, we can’t have a business without you and our communities can’t exist to help patients without a business.

ichat-image11334191881

This often results in our Privacy Policy and User Agreement being updated to help clarify our goals and objectives.  One of our company’s core values is transparency, which means we never want to surprise you.  Our site wouldn’t be what it is today if we didn’t honor the trust you put in us.  Because of that trust and our values, we want you to understand what our Privacy Policy means for you and make sure it clearly states what we’re doing with your information as a business.

So, what has changed about our Privacy Policy?  Well, the short answer is not much – but if you haven’t read it in a while, it will read differently (and hopefully much clearer).  As you know, we talk very openly about how we encourage our paying customers to partner with our patients (check out our Read This! section) to better serve your needs. The latest changes to the Privacy Policy reflect what we have always intended to do as a business, which we’ve hopefully expressed to you.  In this latest revision, we try to make it clearer by providing examples of what different parts of the policy means.  We give specific examples of real world cases of where and when your data is used and/or sold.

For example, over the last year we have expanded our efforts into understanding drug safety in the real world.  This started with the Treatment Evaluations – letting you tell us (and our customers) what is good and what is bad about the treatments you are taking.  Next, we piloted (in our MS community) the ability to voluntarily report adverse events directly to the FDA through PatientsLikeMe.  Lastly, in conjunction with UCB, we are expanding our efforts to measure drug safety in the Epilepsy community.  All of these initiatives are building to a better understanding of how treatments work in the real world – one of our goals here at PatientsLikeMe.

As we’ve said through our site from the start – you control your information and you “may enter as much or as little information as they like.” We just added “and should not enter any information they feel uncomfortable sharing.”  This is common sense on any website, but for new members we wanted to make it clearer.   The bottom line – the more you share about your real identity online (whether its on PatientsLikeMe or other Internet sites), the better the chance that someone could identify you.

If you haven’t see our Read This! section, please do.  It’ll help give you a sense of what we believe the risks and benefits are to sharing information.  Openness is at the core of who we are as a company (see our Openness Philosophy).  Your openness is improving patients’ lives, accelerating research and helping improve medical care.   Thank you for that.  If you have any questions or comments, you know where to find us!

PatientsLikeMe member bheywood


To spit or not to spit (openness gets personal)

Posted January 22nd, 2008 by

23andMe Kit

Over the past seven months of working at PatientsLikeMe, I’ve come to think that the idea of sharing medical and health information is completely normal. Since giving birth to my nearly 3 year old daughter, I have continued to be eternally grateful to other mothers who have willingly and openly shared their deeply personal experiences and advice so readily. There are some unexpected things you have to deal with, and nothing is so helpful as the wisdom of others who’ve been there. Then this December, I had a moment of pause. All of us at the company received a year-end gift of 23andMe‘s Personal Genome Service. Here was my chance to find out what my genes have in store for me and to find out what I might have passed onto my little girl. But do I really want to know? And once I find out, do I want share that information?

Well, it took a while to decide and I hadn’t expected that. I realized that deciding to put very personal details about my health, current or future, out into the world is no small thing. I commend each and every person who has chosen to share their information in our PatientsLikeMe communities. I wouldn’t have made it this far into motherhood without the nitty-gritty, honest information that other mothers have shared with me, and I’ve been truly and deeply inspired by the information that people have so willing shared on our site. I would certainly want access to that knowledge and experience if I needed it. But, if I want to have access to that kind of information, then I have to do my part too. So in the end, I decided to spit. Now I’m waiting to find out what my genes have in store for me and my family. Openness, here I come.

PatientsLikeMe member kbrigham


The Value of Openness

Posted December 13th, 2007 by

plm logo gif

Welcome to the PatientsLikeMe blog. Here you will get firsthand accounts of our growth and how we are impacting global health care. Why have we chose the name “The Value of Openness”? Read our Openness Philosophy below, and you’ll see why.

________________________

Openness is a good thing.

Most healthcare websites have a Privacy Policy. Naturally, we do too. But at PatientsLikeMe, we’re more excited about our Openness Philosophy. It may sound counterintuitive, but it’s what drives our groundbreaking concept.

You see, we believe sharing your healthcare experiences and outcomes is good. Why? Because when patients share real-world data, collaboration on a global scale becomes possible. New treatments become possible. Most importantly, change becomes possible. At PatientsLikeMe, we are passionate about bringing people together for a greater purpose: speeding up the pace of research and fixing a broken healthcare system.

Currently, most healthcare data is inaccessible due to privacy regulations or proprietary tactics. As a result, research is slowed, and the development of breakthrough treatments takes decades. Patients also can’t get the information they need to make important treatment decisions. But it doesn’t have to be that way. When you and thousands like you share your data, you open up the healthcare system. You learn what’s working for others. You improve your dialogue with your doctors. Best of all, you help bring better treatments to market in record time.

PatientsLikeMe enables you to effect a sea change in the healthcare system. We believe that the Internet can democratize patient data and accelerate research like never before. Furthermore, we believe data belongs to you the patient to share with other patients, caregivers, physicians, researchers, pharmaceutical and medical device companies, and anyone else that can help make patients’ lives better.

Will you add to our collective knowledge… and help change the course of healthcare?

________________________

Thoughts? Comments? We’re always eager to engage in conversation regarding openness of health data.

Thanks, and welcome to “The Value of Openness”.

PatientsLikeMe member dwilliams


PatientsLikeMe launches “Data for Good” campaign to encourage health data sharing to advance medicine

Posted March 10th, 2014 by

Public Service Announcement-Style Video Calls Patients to
“Donate Your Data for You. For Others. For Good”

CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data for good,” which underscores the power of donating health data to improve one’s own condition, help others and change medicine.

“This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” says Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “The ‘data for good’ campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It’s also meant to inspire more people to contribute their experiences to accelerate research.

In the video series, PatientsLikeMe co-founder Jamie Heywood walks people through the journey of being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system. He then asks everyone to participate in a movement around health data donation – “join us in this amazing journey to make your data, your experience drive medicine”.

This campaign launches on the heels of a recent paper published by the Institute of Medicine (IOM) highlighting a PatientsLikeMe survey focused on people’s willingness to share health information to change medicine.  According to survey results published in the paper, 94% of U.S. adult social media users with a medical condition agree with sharing their health data to help patients like them and should be used to improve the care of future patients.

“Sharing helps me track important health information and improve research about this disease. If I am willing to be transparent, hopefully others will be inspired to do the same,” says Starla Espinoza, a member of PatientsLikeMe since 2008, joining just months after her multiple sclerosis diagnosis. Starla represents one of more than 250,000 members who are donating their disease data to research on PatientsLikeMe. To date, the community has contributed more than 21 million structured data points about their disease experiences including treatment and symptom reports, demographic information, health outcome surveys, lab data and more. In a recent study focused on sleep issues, PatientsLikeMe was able to pull more than 5-years worth of data to analyze from its platform – including over 184,000 symptom reports previously shared by 65,000 chronically ill patients. The company then ran an additional survey to collect more data and received 5,000+ responses in less than two weeks.

PatientsLikeMe’s “data for good” campaign will blanket all of its social media channels and invite people to join the movement (#dataforgood).  “Your data has a heartbeat that gives new life to medical research and a better future to someone like you,” says Heywood.

Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com/dataforgood.

 

About PatientsLikeMe

PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.


PatientsLikeMe in real life: reporting back from the PFF Summit

Posted January 6th, 2014 by

Dave, Rishi, and I spent a few days last month in sunny La Jolla, California – site of the biennial PFF Summit. Well, La Jolla is usually sunny… this year it was unseasonably cold and rainy! Nevertheless, not even the nasty weather could dampen the enthusiasm of more than 500 clinicians, researchers and (most importantly!) patients and caregivers who turned out from all over the world to meet up and share the latest research on pulmonary fibrosis.

The PFF Summit was hosted by the Pulmonary Fibrosis Foundation (PFF), who we met a few months after announcing the launch of the PatientsLikeMe IPF Community. We were very enthusiastic to help support the PFF’s work by sponsoring and contributing to the research exhibition at the summit. While I spoke with patients, caregivers and clinicians about our open patient registry and the history of PatientsLikeMe, Dave and Rishi learned about the latest advances in PF research and shared our study of the impact of PF on patients’ sleep. If you haven’t heard about it yet, here’s what we learned about PF patients and sleep:

  • A total of 66 IPF patients reported having or possibly having sleeping problems, and 47% of these had sleeping problems between 1 and 5 years.
  • Over half of our IPF members said that their sleeping problems were moderate, severe or very severe, and that their sleeping problems had affected their quality of life in the past 4 weeks.
  • IPF patients that have had sleep problems for a long time tended to report a lower quality of life.

Dave in front of the PatientsLikeMe poster with the findings from our study of PF and sleep.

There were many moments that both inspired and enriched our time at the Summit. Some highlights include:

  • Hearing patients say, “I’ve heard of you!” or “I just joined the community!” Welcome and thank you!
  • Watching patients engage with the science and ask thoughtful, tough questions of the medical experts in their field
  • Chatting with the caregiver of a newly diagnosed patient about how much support she had gained from connecting with other patients and caregivers through their local support group
  • The PFF’s announcement of plans to build a clinical registry and care center network with leading PF researchers and their institutions beginning in 2015

Rishi at the PatientsLikeMe booth.

We had a lot of fun and learned even more, but we came home knowing there is still much to be done back here in Cambridge on behalf of all patients. We continue to be proud contributors to patient-centered research that advances medicine. On a personal note, I am profoundly grateful to all our members, for your continued openness and the courage with which you continue to share your story. It is always a pleasure to meet you in real life. You’re the reason every person on the PatientsLikeMe team comes to work every morning, and why we continue to believe that it’s you – the patient – that will change healthcare for the better.

PatientsLikeMe member ArianneGraham


A day in the life of Social Media Specialist Jesse Smith

Posted November 25th, 2013 by

jsmithOur members give us a glimpse of their personal lives every single day when they share through their PatientsLikeMe profiles, and as the days tick down until Thanksgiving and Christmas, we’re getting into the holiday spirit by sharing a little about ourselves with you.

Jesse Smith is the Social Media Specialist on the marketing team at PatientsLikeMe, and the Boston college alum/avid chef recently sat down and answered a few questions about her PatientsLikeMe experience.

How did you first learn about PatientsLikeMe? What led you to join the marketing team?

I first learned about PatientsLikeMe when I was looking for positions in health marketing. I saw their posting for a Social Media Specialist, so I looked into the company. I was immediately impressed and excited, and started reading and watching everything I could about the company. It turned out that a fellow Boston College alum, Lori Scanlon, was the VP of Marketing and Communications, so I sent over my application to her right away. I was thrilled when I was offered the position, and couldn’t wait to get started!

Tell us a little bit about you. Rumor has it that you’re quite the cook.

I’m no Julia Child, but I certainly love to cook. Once a week, three of my friends and I get together to cook new recipes. It certainly makes things easier to have 8 hands working in the kitchen! I also love to play tennis whenever I get the chance. I need to practice as much as possible so that I can soon beat my boss, Brian Burns, who sadly took me in a 6-3, 6-2 game earlier this summer. I’m also a big BC Hockey fan, cat-lover and singer.

How do you see social media contributing to the future of medical research and PatientsLikeMe’s vision of changing healthcare, for good?

Social media is a valuable tool for moving the vision of PatientsLikeMe forward. PatientsLikeMe is committed to openness, and social media helps enhance our ability to be true to our core value of transparency and add to the collective knowledge of our social community. On Facebook, we’re able to connect with members and build a relationship that compliments the conversations happening on our site. The fast-paced world of Twitter allows us to enter into conversations with non-members, members, and industry leaders all together in real-time to get them the information they need in an easily digestible and shareable form. For example, we recently participated in a live tweet event around a Google hangout on the topic of sleep, which let all our followers and non-followers see the exciting new findings from PatientsLikeMe on stress and insomnia. That type of message would have been a lot more difficult to get across to multiple populations in the same way with more traditional marketing techniques. Social media is fun, fast and easy to use – so it’s the perfect way to connect people to each other, to us and to our mission.

What’s your favorite part about working at PatientsLikeMe?

Call it a cop-out if you will, but I can’t pick just one! I love the freedom I have in my position to be creative, the opportunity the company provides to learn anything I’d like and the ability to work with patients to advance healthcare on a daily basis. I truly appreciate that the people who work here are smart, dedicated and value a work-hard, play-hard culture. All the snacks in the kitchen and awesome places to walk to for lunch don’t hurt either!

We’ll be continuing with more “Day in the life” portraits featuring PatientsLikeMe employees from different departments, so stay tuned for more! You can also check out some of our previous entries by clicking here.


Interested in joining our engineering team and making a difference in patients’ lives? Check out our Careers page to see our current job openings.


The Open Research Exchange- A talk with Paul Tarini and Ben Heywood

Posted August 30th, 2013 by

Founded on a philosophy of “openness,” PatientsLikeMe aggregates patient-reported data from over 200,000 members on 2,000 diseases, analyzes them and shares the results with healthcare and life science companies to accelerate research and develop more effective treatments.

With support from the Robert Wood Johnson Foundation, we’re now building the Open Research Exchange (ORE) so that researchers, clinicians, academics and patients can collaborate to put patients at the center of the clinical research process. ORE will be the hub where we can work together to develop new health outcome measures and increase our collective understanding of disease – faster than ever before.

Hear RWJF Senior Program Officer Paul Tarini and PatientsLikeMe Co-Founder and President Ben Heywood talk about ORE.

round-portrait-ptarini-102bfb9681a2492aab8cc512a9933f05

round-portrait-bheywood-041861e7675e8a6d7db8b2ed37789e11


Psoriasis, Adherence and More: An Interview with Dermatologist Dr. Steve Feldman

Posted January 18th, 2013 by

Dr. Steve Feldman, MD, PhD

Dr. Steve Feldman, MD, PhD, is Professor of Dermatology, Pathology & Public Health Sciences at the Wake Forest University School of Medicine. The author of more than 500 peer-reviewed medical articles, Dr. Feldman is well-known for his research studies focused on patients’ adherence to topical treatments as well as for founding www.DrScore.com, an online doctor rating and patient feedback website.

What does Dr. Feldman think about what we’re doing at PatientsLikeMe?  And what’s his take on the current challenges for psoriasis patients, as well as the treatment advances that may be ahead?  Find out that and much more in our interview.

1. As the founder of DrScore.com, tell us how rating doctors online can improve medical care.

Doctors want to give their patients great medical care.  Online ratings can help by giving doctors the feedback they need to know—from patients’ perspectives—such as what the doctor is doing well and what the doctor can do to enhance the quality of care in their practice.  www.DrScore.com was designed to help facilitate that feedback while also giving patients a better picture—more transparency—of the quality of care physicians provide, something that wasn’t nearly so easy to do in the pre-Internet era.

2. What do you think about PatientsLikeMe’s data-sharing platform and openness philosophy?

PatientsLikeMe does a truly wonderful job taking advantage of the capabilities of the Internet to permit data sharing among patients so they can learn from one another.  Another extraordinary accomplishment has been to develop ways to combine that data in order to better understand diseases and the benefits and risks of the treatments for those diseases.  Openness is a terrific attribute in this Internet age.  I am very optimistic about medicine and health care providers and think there’s nothing to hide (and if there were something to hide, it ought to be exposed)!

3. You’ve done extensive research around treatment adherence.  What are the considerations for patients?

Well, as the former Surgeon General put it, medicines don’t work if patients don’t take them.  Taking medicine isn’t easy, unless it is a habit.  And when a patient starts to use a new medicine, taking it isn’t a habit.  Patients forget their medicine, they may be fearful of their medicine, there are just all sorts of reasons why patients don’t always take their medications.  I think coming up with a plan, a system, for remembering is helpful. (I keep my own pills in a seven-day dispenser on the dinner table, which works great for me except when my family goes out to eat).

Dr. Feldman uses a seven-day pill dispenser box like this one to help with his own treatment adherence.  Image courtesy of Stock Free Images.

If patients are fearful, they should have an honest discussion with the doctor about it.  One thing is certain: patients should be honest with their doctors about how they use their medicines.  It does neither the patient nor the doctor any good for the patient to tell the doctor one thing but do something else.  If a doctor does prescribe a medicine that the patient thinks is too costly or too risky, the patient should let their doctor know.  The doctor wants to know and may be able to change things.

4.  We have a growing psoriasis community.  What challenges do psoriasis patients face?

Psoriasis has a huge impact on patients’ lives.  It affects how patients perceive themselves, how other people perceive the person who has psoriasis, and, in many cases, how someone with psoriasis thinks they are perceived by others.  The lesions aren’t just unsightly; they can be itchy and painful.  The condition is caused by an overactive immune system, which can also result in arthritis and increased risk of cardiovascular disease and depression.  There are good treatments, but the treatments have their downsides: they may be costly, inconvenient, messy, and risky.  One of the biggest challenges is getting educated about all the potential options.  It isn’t easy.

5. In our forum, patients have been discussing whether diet can affect psoriasis.  What’s your take?

Well, I don’t know of any particular dietary issues that have been definitively shown to affect psoriasis one way or the other (except perhaps that starvation temporarily improves the disease, probably by inhibiting the immune system).  But if a particular patient finds some particular dietary issue that makes their psoriasis worse (or better), they should eat accordingly.  Some patients tell me beer and/or wine makes their disease worse or that avoiding gluten has helped.  The PatientsLikeMe platform may be helpful in compiling the experiences of many people to see if these are issues for individuals or could truly help patients in general.

6. Any thoughts on what’s ahead in terms of psoriasis management and treatment advances?

As our understanding of the immune system improves, scientists at drug companies will be developing newer and perhaps better ways of controlling immune diseases, including psoriasis.  As our health care system changes to become more cost conscious, there may be greater reliance on low cost treatments, like generic creams and ointments for people with mild disease and more use of phototherapy for people with more severe involvement.  And with better data collection—like with PatientsLikeMe—we may develop a better understanding of what works, what doesn’t work, and what risks and benefits our treatments have.


A Day in the Life of Health Data and Drug Information Clinical Specialist David Blaser

Posted January 11th, 2013 by

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.

David Blaser

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.

David Blaser (second from left) at play

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.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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.


Innovating Healthcare Through Shared Patient Knowledge

Posted December 12th, 2012 by

What happens when a patient finds another patient like them – for example, someone the same age with the same disease taking the same treatments?  Problems get solved, says PatientsLikeMe Co-Founder and Chairman Jamie Heywood.

Tune in below to hear more of Jamie’s thoughts in his interview with Boston.com, the online home of the Boston Globe, as part of an ongoing series called “The Innovators.” From the front door of our offices in Cambridge’s Kendall Square to the engineering team’s color-coded whiteboard, take Jamie’s insider tour of PatientsLikeMe headquarters and learn more about our mission of transforming healthcare.

The Innovators: Patients Like Me, Meet James Heywood, Innovator, Chairman and Co-Founder from REEL Entrepreneurs, Inc on Vimeo.

For other recent media highlights, visit our Press page.