2 posts tagged “patient vocabulary”

TEDMED 2013: Creating and experiencing wow!

Posted May 2nd, 2013 by

One word comes to mind when describing my recent experience at TEDMED 2013 – WOW!  Held annually at the Kennedy Center in Washington D.C., TEDMED is a conference unlike any other. For 3 ½ days you are immersed in the ideas and creativity of people from around the world who bring diverse perspectives to some of our greatest challenges in healthcare.

For me it was especially awesome because I contributed to the ‘wowness.’ I had the privilege of being a TEDMED 2013 speaker – in fact, I was the first nurse to ever take the TEDMED stage.

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My talk addressed the question “Does anyone in healthcare want to be understood?” At first glance the answer to this question seems obvious – “yes, of course we all want to be understood.” However, if you consider how many words used in healthcare are Latin or Greek, insider jargon or acronyms, the answer is not so obvious after all.

I reminded the audience that the language of health is missing the words and experiences of those we say are at the center of healthcare – patients. It’s time to move beyond the rhetoric of patient-centeredness to actually include the lexicon of patients in the language of health.

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At PatientsLikeMe we have been doing just that for many years. We retain the words and phrases patients use to describe their symptoms and side effects while behind the scenes we match them to the words used by doctors and health professionals. With your help, we are creating the world’s first patient vocabulary.

By the end of my talk I offered the answer to the question “Does anyone in healthcare want to be understood? Yes, patients want to be understood.”

It’s time to humanize the language of health with the lexicon of patients.

Sally Sign off


A Day in the Life of Research Assistant Shivani Bhargava

Posted February 15th, 2012 by

What’s it like to work at PatientsLikeMe?  We are continuing to reveal just that with our monthly blog series “A Day in the Life,” which features various employees from different departments.  So far, we have profiled Research Scientist Mike Massagli and User Experience Engineer Cris Necochea, and today, we share our interview with Research Assistant Shivani Bhargava.  Unlike Mike and Cris, who are both company veterans, Shivani offers the perspective of a more recent hire.  Find out what it’s been like for her to jump in and start her career with our team.

PatientsLikeMe Research Assistant Shivani Bhargava at Moss Beach, California

1.  What convinced you to join PatientsLikeMe?

I was recruited right out of undergrad in the Spring of 2010. I was just beginning my job search and a previous employer pointed me to this fantastic startup in Cambridge, MA. It took five…maybe ten minutes to fall completely in love with the website and realize I wanted to help contribute. I really liked the idea of a completely unique healthcare company that was using a creative business model to actually improve healthcare by putting the patient voice first. After two interviews, in which I’m almost positive Paul Wicks and Sally Okun took pity on my bumbling college student enthusiasm, I started working for PatientsLikeMe!

2.  Tell us what it’s like to be part of the Data Operations Team.

Health Data Integrity is the name of the game. And that’s exactly what we do. We make sure that patient data is entered accurately and according to the intentions of the patients themselves. Things have sure gotten more interesting since the expansion of the site to include every condition, but it’s been an educational and enriching process. It’s normal to find us simultaneously working with a diverse number of patients and various medical ontologies and online resources to carefully map the patient vocabulary against an existing clinical one.

It’s also humbling to work with such a qualified team. Between PharmD’s and RN’s, we’ve got degrees and years of experience galore. In fact, I’m the only one with just a mere BA! Everyone on my team continues to amaze me daily with their expertise and ability to work through tough problems. If you put all our heads together, we’re pretty much an unstoppable force at PatientsLikeMe.

3.  What research projects are you working on at the moment?

One of the big things we’re working on as a team is trying to build a medical framework using patient-reported data. Since one of our goals is to map a patient vocabulary, we’re trying to infuse the mountains of enormous data that our users provide with structure and organization, similar to existing medical ontologies. The potential benefits of this would be endless. Overall, it would help research and patient empowerment, and it would allow clinicians to better understand the patient experience.

Of course, it’s not an easy task. Imagine trying to invent an entire language with rules, categories and syntax with just a tiny, yet brilliant team!  Okay, well, maybe it’s not quite like that.  We do, after all, have the help of an online information revolution where we can easily access clinical resources.  Also, we have at our disposal the insightful and diverse patient community at PatientsLikeMe. And because of that, it’s a challenging project that continues to be dynamic and make progress. Look out healthcare systems!

And that is ultimately why I love working at PatientsLikeMe. We’re really out to change the face of the healthcare system and maybe not just here in the states, but internationally too!

4.  How would you describe the PatientsLikeMe work culture?

Well, between free lunches during Journal Club on Fridays [where a different speaker talks to the entire team each week], ping pong breaks in the afternoons and the LEGO station in the engineering pit, it’s hard work. Clearly not meant for the stiff, traditionally-minded laborer at heart.

Kidding aside, the startup environment and more specifically the PatientsLikeMe atmosphere makes working here not at all like work. It’s normal to have impromptu discussions or meetings about new ideas or problem-solving strategies. People are productive here. You are constantly working on new projects, new goals and new aspects of the site, which makes sense given the constantly evolving nature of the website. Everyone brings valuable perspective to the table and together we’re building something that all of us believe in as a cause.

That’s the biggest thing. We’re not a non-profit or a charity organization. We’re a business…with a rather noble and innovative product. And that really lies at the crux of our amazing work culture.

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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 Community Moderator, Marketing Associate, Research Client Manager and more at the moment.