We wanted to take a quick look back and share how the PatientsLikeMe community has continued to change healthcare for good over the last year. Thousands of members added their voices to real-time research, all while providing support to one another and sharing about their personal health experiences. It really is a group effort, so a big shout out and thank you to everyone in the community.
Here are some highlights from 365 days of donating data, sharing experiences and learning more, together…
What were some of the hottest topics in the forums?
- ALS/MND – Burning eyes
- Multiple sclerosis – How multiple sclerosis impacts your emotions
- Pulmonary fibrosis – The famous cough
- Psoriasis – Sun! Help or not?
- Parkinson’s – PD and constipation
- Fibromyalgia – You look perfectly healthy
- Mental Health and Behavior – Identity crisis
Who shared their story on the PatientsLikeMe blog?
- Alkaptonuria – Carolyn
- Multiple sclerosis – Marcia, Ted, Geof, Monica, Alys and Tricia
- Psoriasis – Maria, David and Erica
- Pulmonary fibrosis – Lori, Keith & Sarah, Jeff and Kim
More than 8,000 members donated their data to a PatientsLikeMe survey, including…
- The 5-part Uncovering Psoriasis survey
- Diabetes and Stress
- Epilepsy “Rescue Medications”
- “Are You Sleeping?” insomnia survey – check out our new infographics
- IPF Getting Diagnosed
- Daily experiences with CLL
- Psoriasis and biologics
- Daily life with fibromyalgia
And close to 5,000 added their voices to our first ever Open Research Exchange questionnaires this year, including…
- The Treatment Burden Questionnaire
- The WHY STOP questionnaire on type 2 diabetes
- A questionnaire on hypertension
- The Perceived Medical Condition Self-Management Scale
As we move into 2014, we’re more confident than ever that the patient experience – your experience – will not only help everyone learn more about their conditions right now, but continue to change healthcare for good.