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%
- 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%
- 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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