Listen Up! Here Comes The Patient Voice

In addition to hearing from you through our PatientsLikeMe newsletters, we sometimes get a chance to meet you in person to hear what you have to say about living with your condition.   Here are two videos highlighting interviews we conducted in 2010 with patients just like you.  In the first video, you’ll hear directly from members of our Parkinson’s Community, representing Team PatientsLikeMe at the 2010 Parkinson’s Unity Walk.  The second video is from the U.S. Transplant Games, where we interviewed YellowisJoy, a member of our Transplant Community and National Kidney Foundation’s Team Mid New England. Listen up – here comes the patient voice! Subscribe to our YouTube page to receive updates about new PatientsLikeMe videos.

Comparing Our Transplants Community to the UNOS/OPTN Databases

Last November (2010), PatientsLikeMe was fortunate to have the opportunity to showcase our research at the world’s largest gathering of kidney and kidney transplant professionals.  The American Society of Nephrology (ASN) annual meeting is the premiere event platform for debuting revolutionary treatments, cutting-edge technological breakthroughs and top research findings. PatientsLikeMe presented a poster about our Transplants Community to more than 12,000 physicians, scientists and other healthcare professionals from all 50 states and around the world.  The poster was very well received, and it allowed us to introduce our relatively young Transplants Community to a wide array of industry professionals, many of whom will pass the word on to their patients. The poster we presented was elegant yet simple in its design.  Essentially, we compared the profile of our Transplants Community – now with more than 3,100 patient members – to published data from the United Network for Organ Sharing/ Organ Procurement and Transplantation Network (UNOS/OPTN) databases.  What did we find? About half of our kidney transplant patients knew the exact degree of tissue matching they had with their donor (referred to as HLA matching) The fewest HLA mismatches in kidneys came from deceased rather than living donors Within the living …

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Aligning Interests: A PatientsLikeMe Year in Review (Part VII – Business Development)

2010 was a strong year for business development at PatientsLikeMe.  Our goal was – and continues to be – to align patients’ needs with industry interests in order to maximize interaction between the two.  Here are a few of our successes and challenges over the year. Successes 1.  New Partnerships, New Communities In the first quarter of 2010, PatientsLikeMe launched two communities with corporate partners.  UCB helped us develop our Epilepsy Community, while Novartis partnered with us to create our Transplants Community.  Both communities have grown to more than 3,000 patient members and are now the largest of their kind in the world. As with all of our partnerships, we made sure the focus is on the patient experience.   For example, what are your perceptions about the medications you take?  How do you see these treatments impacting your quality of life?  Getting quantifiable data on such questions can help our partners understand how they can help patients like you improve your health outcomes. 2.  Enhanced Services for Partners When we create products and services for our corporate partners, it’s with a single objective:  to amplify the patient voice.  As a result, healthcare companies who wish to improve health outcomes have …

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Overcoming Obstacles – Newsletter Highlight 2010

Last week, we posted highlights from our December community newsletter interviews. As we close out 2010, we want to spotlight another question asked this month – one that is relative to all members, all patients (no matter the condition).  What obstacles have you faced and overcome this year? To review all of our newsletters, you can visit our archives page here. * * * (Amy) What obstacles have you overcome this year? (ellieGADsufferer – Mood Conditions Community) First of all, I became well enough to leave my local psychiatric hospital after having been an inpatient for six months. My anxiety means that all new things – even getting on a bus to go somewhere new – make me have severe panic symptoms. I now make sure I am out of bed by 0700hrs during the week and make myself go out at least three times per week, whether it is meeting friends for coffee or attending appointments. Otherwise I will return to “avoidance,” whereby I cut off all contact with friends and family, including calls and text messages. (kidneygirl1198and0505 – Transplants Community) I have had to deal with and overcome the struggles that come with tardive dyskinesia. Reglan has been …

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Sharing and Learning with PatientsLikeMe

In December community newsletters (launched earlier this week), we asked some of our members to think about what they’ve shared and compared in 2010.  Below are highlighted answers from each interviewee across all nine community newsletters.  Thank you for your contributions. We also want to thank all of you who have contributed to the 90 newsletters we ran this year, including the newly launched ones in our Epilepsy and Transplants communities.  Finally, a special thanks goes out to our newsletter writer, Amy Morton, for pulling these together every month. To review all of our newsletters, you can visit our archives page here. * * * (Amy) How has PatientsLikeMe helped you learn and share this year? (Tommy Maker – ALS Community) PatientsLikeMe has provided me with new friends-people who are experiencing the same problems as I am. I’ve learned that there isn’t a single question that won’t get a vast myriad of answers from the community. I’ve learned that we’re all very different people, and I’ve learned we don’t always agree.  I’ve learned that we all care enormously for each other and are very eager to help those who find themselves in the same boat as we are. But most …

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Drug Safety: It’s About More Than Just Compliance

Engaging in social media presents a number of uncertainties to pharmaceutical companies. In a world where much of the medical dialog has moved online, these uncertainties have emerged due to absent or unclear guidelines from the Federal Drug Administration (FDA), privacy and regulatory concerns about engaging directly with patients, and the potential for significant consequences. When I recently spoke before the FDA, we highlighted how our pharmaceutical partners are taking a leadership role by navigating through these issues. In so doing, our partners are learning about real world experiences of patients and how to meet their adverse event reporting responsibilities in the PatientsLikeMe Epilepsy, Organ Transplant and Multiple Sclerosis communities. “…as the FDA contemplates the Internet and social media as an emerging source of drug safety data, it is essential to consider what characteristics distinguish a social media site as being capable of contributing to drug safety in a meaningful, computable and quantifiable manner.” Meaningful, computable and quantifiable are three words that underscore all that we do at PatientsLikeMe. This includes the creation of our patient safety program. Early on, we approached patient safety proactively with a pilot program in our Multiple Sclerosis Community. Launched in 2009, this program allows …

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Know Thy Self – Measuring Your Quality of Life

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 …

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