3 posts from June, 2010

It’s Official: Sharing Health Data Improves Outcomes

Posted June 21st, 2010 by

(Listen here to the PatientsLikeMeOnCallTM podcast on this topic)

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Last week the PatientsLikeMe R&D team published a study entitled “Sharing Health Data for Better Outcomes on PatientsLikeMe” in the Journal of Medical Internet Research (JMIR), the leading open access peer-reviewed journal on health care in the Internet age. The study aimed to find out direct from our users how they were using the site and whether the information they’d learned was helping to influence their interactions with healthcare providers, their decision-making, and ultimately their outcomes. Because JMIR is an open-access journal, you can download the whole paper for free here, but here are some of the highlights from the 1,323 patients that completed the survey:

  • Almost all of our patients (94%, N=1,249) were diagnosed when they joined the site; an important factor in joining a community of “patients like me”
  • The majority of members (72%, N=952) agreed that the site was helpful for learning about a symptom they have experienced (check out our symptom reports to see what they’re learning!)
  • Many respondents (57%, N=757) agreed that the site had helped them to understand side effects of their treatments (check out our treatment reports to find out more!) and 42% (N=559) found the site helpful in finding another patient with experience of taking a specific treatment for their condition
  • Patients who used the site more perceived more benefits. We gave each patient an “engagement score” from 0-4 based on how many features of the site they’d used; we found that the higher the participation, the higher the benefit. Correlation doesn’t necessarily mean causation though, so it could be patients who share more get more out of it, or it could be that patients who have already benefited from the site are more willing to participate. Interesting hypothesis for a follow-up perhaps?
  • Nearly a third of patients (29%, N=388) had printed out their profiles and shared them with their doctor; two thirds of users (66%, N=871) said their healthcare team were supportive of them using the site. More controversially, we were interested to find that overall, 12% (N=151) said they had changed their physician as a direct result of information received from PatientsLikeMe; that number was twice as high in fibromyalgia (21%)!
  • In the spirit of openness we also made available (in de-identified form) all of the open comments we received at the end of the survey on how we could improve the site, both positive and negative.

This was the first study to quantify the potential benefits that users of the site can experience; we hope to discover more about how these change over time and what benefits are perceived by users of our newer communities such as epilepsy and organ transplants.

PatientsLikeMe member pwicks


Know Thy Self – Measuring Your Quality of Life

Posted June 17th, 2010 by

Last Fall, PatientsLikeMe introduced our Quality of Life (QoL) tool which is displayed on the profiles of members in the HIV community.  By answering a few questions, patients can see how HIV is impacting them – physically, socially and mentally.  Today, this same QoL measure is used by thousands of patients across the HIV community and other communities, such as Epilepsy and Organ Transplants.

PatientsLikeMe Research Scientist, Michael Massagli, recently spoke with us in a PatientsLikeMeOnCallTM podcast interview about the goal, outcomes and benefits to measuring your quality of life. Listen here:

“[In the HIV community], we’ve taken a look at the relationship between QoL and CD4 level and find the average score of patients with CD4 below 200 is significantly lower for physical, mental and social well-being.  People with the most comprised immune systems have worse quality of life, across all 3 domains, than other patients… “

To date, several of our members have at least three QoL scores on their profile.  Mike says, “Multiple uses of the QoL instrument by the same person over time helps researchers determine how small a change in QoL scores is meaningful to patients or important enough to evaluate how a treatment is working.”

Adds R&D Director, Paul Wicks, “We all know that measuring disease is important; tumor size in cancer, blood tests in cardiovascular disease, or frequency of seizures in epilepsy, for instance. Increasingly though, clinicians and researchers are coming to realize that these measures don’t give the whole story; they’re missing the real impact of a condition on patient’s ability to function. You might have high blood pressure but it doesn’t affect your life at all, or you might have a relatively low amount of pain (as measured by, say a 0-10 pain scale), but it could be interfering with your work life a great deal.”

So have you completed a quality of life survey recently?  If so, you’ll also notice a cool new feature on the site that helps you better understand how your quality of life compares to others.  When you take 5 minutes to answer the 24 questions in the survey, here’s what you’ll see:

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As Mike says in his podcast, this is just the beginning.  Stay tuned for more about quality of life measurements.


Meet Our Transplant Community’s BionicMan

Posted June 7th, 2010 by

Since the launch of the PatientsLikeMe Transplants Community in March, more than 1400 patients have come together to share and learn from their transplant journeys. Thanks to our partnership with the National Kidney Foundation serving New England, BionicMan was one of the first transplant recipients to sign up and played a critical role in helping us shape the community before it was launched.  Recently, we interviewed BionicMan to learn more about his transplant journey, his experience with PatientsLikeMe, and his participation in the U.S. Transplant Games.

blog-logo2 (PatientsLikeMe) You’ve been a member of PatientsLikeMe since we started testing the transplants community months ago. How did you find out about PatientsLikeMe?

screen-shot-2010-06-07-at-114419-am (BionicMan) I found out about PatientsLikeMe from National Kidney Foundation serving New England.  I think it has benefited me because I like to talk to people and give them the benefit of my experiences.
blog-logo2 (PatientsLikeMe) With both a heart and a kidney transplant, how has your life changed over the years?


screen-shot-2010-06-07-at-114419-am (BionicMan) As both a heart transplant (1992) and kidney transplant (2007), my life has changed in so many ways.  I try to live life to the fullest each day, and appreciate every moment I have with my family. Over the years I have had a few setbacks, like CML and colon cancer and the amputation of my left leg just below the knee, but I have been able to overcome all these things and inspire many people.  I wouldn’t change anything, and I will never ever give up.
blog-logo2 (PatientsLikeMe) What is one thing you think patients waiting for an organ transplant should know?


screen-shot-2010-06-07-at-114419-am (BionicMan) People heading into a transplant should know they are making a lifelong commitment to their health, and they must take care of the Gift of Life they are about to receive.  Just like everyone else, not everyday will be great, but it sure beats the alternative.
blog-logo2 (PatientsLikeMe) You’ve attended the U.S. Transplant Games before.  What was that experience like and would you recommend other patients attend?
screen-shot-2010-06-07-at-114419-am (BionicMan)I would definitely recommend going to the U.S. Transplant Games for every transplant recipient.  It is like being in a city of transplant recipients. Whether you are real athletic or not, you will enjoy the experience, meet people you will be inspired by and remember your whole life. No matter what is going on in your life, you will see people with more problems than you, yet they have overcome.  You will definitely cry at your first Opening Ceremonies, but your life will be changed forever.  You will also get to see the real heroes in Organ Donation – Donors and their families.

One of my proudest moments was during the 5K road race at the Games. I was doing the race in a regular transport wheelchair after losing my leg and before getting my prosthetic, and while rolling past a photographer, he said to me  – “From Stump to Hero!”

blog-logo2 (PatientsLikeMe) Great quote!  Thanks for sharing with us and the community, BionicMan.