2 posts tagged “patient feedback”

Meet our 2019 Team of Advisors!

Posted January 30th, 2019 by

We’re excited to announce the nine members who have been selected to join the 2019 Team of Advisors! This group of active members will be collaborating with PatientsLikeMe in the next year to offer feedback on new research and product development, to advocate on behalf of patients, and provide real-world perspectives to us and our partners.

“It’s nice to connect with people who go through the same things that you do every day,” says on Team of Advisors member Marybeth, who’s living with multiple sclerosis and other chronic conditions.

Click here to watch a 2-minute video about this group!

Say hello to the team! Pictured above left to right:

(Back row/standing)

Marybeth (Blujnbby), living with multiple sclerosis, rheumatoid arthritis, myasthenia gravis

Steven (Stunninsteve), living with multiple sclerosis

Joseph (Jpo_runs), living with Parkinson’s disease

Ashley (Ashley876), living with major depressive disorder and PTSD

(Middle row/seated)

Juana (Juanymata), living with lupus, rheumatoid arthritis, Sjogren’s syndrome

Wes (Jwsexton7), living with ALS

Eva (Treat2c), living with fibromyalgia, migraine, lupus, rheumatoid arthritis, Sjogren’s syndrome

(Front row/seated)

Sande (Sandman123), living with rheumatoid arthritis

Brandy (Bstarks), living with fibromyalgia

This year marks the 5th anniversary of our Team of Advisors program! As in past years, this group is available to our members as a resource to the rest of the PatientsLikeMe community and you’ll be hearing more from them throughout the year. In the meantime, join us in congratulating this year’s team!

Join PatientsLikeMe or log in today to connect with these members (here in the forum or through their linked usernames above) and thousands of others who are living with health conditions like you.

Four Issues, Four Solutions: The Evolution of PatientsLikeMe

Posted May 3rd, 2011 by

Like many of the changes we make to our site, the recent upgrades at PatientsLikeMe – including opening up the site to any patient with any condition and allowing you to share  multiple conditions through your profile – were the direct response to what you, our patients, have asked from us.

Over the past five years, we’ve received a number of requests from you.  Here are the top four points you’ve made in those requests:

Issue 1:  “PatientsLikeMe does not have a community for my condition”

  • Since we launched in early 2006, approximately 25,000 people contacted us and asked us to create a community for their specific condition.  Naturally, that got our attention.

Issue 2:  “I have more than one condition”

  • From the beginning, you’ve told us that you want to be able to share about everything you’re experiencing as a patient, not just one single condition.

Issue 3:  “I can’t access all the relevant information on the site”

  • What if you have MS but struggle with depression?  You told us that you wanted to learn about other health issues – without creating a second account.

Issue 4:  “I don’t define myself by one diagnosis alone”

  • “I am not my disease,” you said.  So what if you could reflect your entire health situation on your profile in order to find people even more like you?

In listening to your input, it became clear what had to be done.  We needed to make it so all patients – and not just those with certain conditions – could benefit from our health data-sharing platform.  We also had to remove the existing limitations on what you could share and who you could share it with.  It was not only what you requested, but it was in keeping with our Openness Philosophy.

Solution 1:  Open up the site to any patient with any condition

  • This allows us to serve any patient who could benefit from our site and help those who requested communities we didn’t already have represented.

Solution 2:  Allow for multiple conditions to appear on one profile

  • For those with multiple conditions, we needed to make it a manageable task for you to add conditions to your profile without the need for multiple accounts.  This upgrade also helps everyone find more patients like them.

Solution 3:  Make all profiles visible to all members who are logged in

  • In order for you to find patients exactly like you – with not just one condition in common, but perhaps three or four – you needed to be able to view all profiles.

Solution 4:  Create a Quality of Life (QOL) survey that works for all patients

  • How do your conditions affect your physical, social and mental well-being? By rolling out a great QOL tool, you can now measure those exact impacts over time, regardless of what individual conditions you may have.

We’re all in this together, and that means we are necessarily evolving together.  Thank you for participating in this process with us, which of course will only continue.  What’s ahead?  Check out our new video below about this chapter in our evolution as well as what other patient-led improvements we envision in the future.