14 posts from December, 2016

The power of your data: How it works for you

Posted December 13th, 2016 by

For these 24 Days of Giving, we’ve been sharing how patient data has the power to change healthcare for the better. But how does the data you donate work for YOU in your own health journey?

PatientsLikeMe members are starting to answer that as part of an ongoing initiative, giving us feedback about the benefits of learning, tracking and connecting on PatientsLikeMe. And no, we’re not trying to toot our own horn here – we’re trying to see how and where you get value from the site so we can do more of what we’re doing right and less of…well, all the other stuff.

Even though this research is far from over, we wanted to share a couple of highlights from the community.

So, what are members who’ve taken the survey saying? How has PatientsLikeMe helped you to better understand your condition or improve some aspect of your care? Let’s have a look.

Here are the top 3 things you understand better since joining PatientsLikeMe*:

  • How your condition(s) might affect you – 67%
  • What might help you live better with your condition(s) – 63%
  • Treatment side effects – 61%

Others include:

  • Available treatments – 61%
  • Important factors in making decisions about treatments – 57%
  • What might help you get better – 50%
  • How to deal with other problems in your life (e.g. stress, work, money) that may be caused by your condition(s) – 49%

Here are the top 2 ways your relationship with providers and symptom management improved*:

  • Had better conversations with your healthcare professionals – 52%
  • Managed your symptoms better – 46%

Others include:

  • Been better at taking your medication – 34%
  • Tried a new way to manage side effects – 31%
  • Asked to see a specialist doctor – 25%
  • Start a new treatment – 16%
  • Stopped a treatment – 15%
  • Changed your doctor – 13%

Top takeaway? Participating on PatientsLikeMe seems to be having some positive benefits to understanding your condition, managing your symptoms and communicating with your care team. Now that’s some pretty powerful stuff.


*Note: Of those who took the survey, approximately 6-8% missing for each question. Percents are calculated out of valid non-missing responses.



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24 Days of Giving: Halfway checkpoint

Posted December 12th, 2016 by

The midpoint. The halfway mark. Call it what you want, but we’re smack in the middle of 24 Days of Giving. So, where do we stand on the data donation front? Let’s take a look:

  • 12,340 treatment reports
  • 90,610 symptom reports
  • 72,593 health outcomes

So if you’ve been donating, keep at it. If not, why wait? Your data has power – just watch what some PatientsLikeMe employees have to say about it.

Every piece of health data you share on PatientsLikeMe over the next 24 days will contribute towards a $25,000 donation goal to Make-A-Wish® Massachusetts and Rhode Island. You donate your experiences that can help someone like you, and we’ll donate on your behalf to help fund life-affirming wishes for seriously ill children. 


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