The power of your data: How it works for you

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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9 thoughts on “The power of your data: How it works for you”

  1. I have found from the forum that I see what symptoms that others have and I had no idea of that being a symptom of the condition. It is much better to know what is causing it and the a person is not overwhelmed.

  2. I need advice on getting supplemental insurance that will not bankrupt me. At present my supplement is Mutual of Omaha. I’m 73 plus have ms. There are other plans out there but start out relatively high (remember relatively to my income) and are guaranteed to continue to rise in cost. I know I’m not alone but surely there is a way to get help rather than moving to Canada!

  3. I need advice on getting supplemental insurance that will not bankrupt me. At present my supplement is Mutual of Omaha. I’m 73 plus have ms. There are other plans out there

  4. I have learned to deal with the occasional flare ups of pain I know will come, I also realized that some the physical issues I have will get better with time I also went to a more naturalistic method of dealing with my issues.

  5. I’m going to be missing my parents on Christmas this year. But instead of being sad, I’m going to remember all our happy family Christmas memories ❤

  6. Giving and sharing data is important and if it will help me understand, my Epilepsy better and find a cure. Even if not in my lifetime. Giving imput is very important to research of all conditions.

  7. I refuse to do tweets, I’m afraid. I can spell, construct sentences which are comprehensible and easily understood. I am also an editor.
    Twitter is for twits who cannot do any or all of the above, therefore I ignore it.

  8. This forum helps me to stay connected and in touch. I hope to help others with what I’ve learned in managing symptoms. I like to treat each day as if it were my last by maintaining a positive attitude and always looking forward.

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