Doctor Visit Sheet

Partnering with Patients to Improve Healthcare

Last week I had the pleasure of attending the Institute of Medicine’s (IOM) Partnering with Patients workshop, where PatientsLikeMe’s Health Data Integrity & Patient Safety Director Sally Okun, RN, MMHS, and PatientsLikeMe member Laura Phillips, who has multiple sclerosis (MS), shared the stage as co-presenters. It was a novel approach to incorporate a patient co-presenter into our presentation, and Sally reported that it made the experience quite special for her. The day-and-a-half-long meeting brought together clinicians, researchers, policy makers, advocates, patients and caregivers—people who all care about creating better value and improving the quality of healthcare in the US. In the opening remarks by IOM Chairman Michael McGinnis, whose arm was in a sling, we were reminded that everyone is a patient at some point, but most don’t always have that mindset. The meeting covered many topics, including the problems with healthcare that are complicated and hard to change. Coming from the PatientsLikeMe community team, the topic that struck me most was empowering patients to meaningfully participate in the decisions that affect them, such as which treatment to take or which doctor to see. There are many barriers to finding the answers, and we have a long way to go in …

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PatientsLikeMe Exhibits at the American Academy of Dermatology Summer Meeting

As you know from our recent blog post, August is Psoriasis Awareness Month, and the psoriasis community at PatientsLikeMe has nearly 2,000 members. It’s only fitting that PatientsLikeMe spent last week connecting with others focused on skin health at the American Academy of Dermatology (AAD) Summer Academy Meeting, an annual educational event for dermatology-focused medical professionals. Held at the Hynes Convention Center here in Boston from August 15-19th, the conference hosted over 1,350 healthcare providers and featured more than 140 exhibitors, including PatientsLikeMe. If you happened to be at the event and ventured by our booth, you would have seen the friendly faces of PatientsLikeMe employees Sally Okun, Lori Scanlon, Chris Fidyk, Marcy Fitz-Randolph and Sebastiaan Foppema, who spent time chatting with dermatologists and giving them information about the 5,000+ patients with a range of skin conditions at PatientsLikeMe. The team received a lot of positive feedback from providers about the site, as well as specific features such as our Doctor Visit Sheet. Sally, who oversees heath data integrity at PatientsLikeMe, even added a new condition, confluent and reticulated papillomatosis (CARP), to the PatientsLikeMe system in real time after speaking with a provider who specializes in that condition.. In the near …

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A Peek at the February Newsletter for Members

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our February edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today. MONTHLY MUSINGS Ever feel like you’re so busy seeing specialists that it’s easy to forget about your annual physical?  In addition to checking up on your overall health, an “annual” is a great time to monitor your blood work – such as cholesterol and Vitamin D levels – which you can now record on your PatientsLikeMe profile.  It’s also a good opportunity to discuss any new concerns with your primary care physician (PCP). But with only a few minutes with your PCP and a whole year’s worth of health matters to cover, it can be hard to remember what’s happened between visits, and even harder to get to everything that’s important. Fortunately, your printable and customizable Doctor Visit Sheet (DVS) can help.  Bring this complete record with you …

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A Peek at the January Newsletter for Members

What kinds of things do we cover in our monthly newsletters for members? Take a look at the excerpt below from our January edition. Also, in case you didn’t know, anyone – whether a PatientsLikeMe member or not – can view our current and past newsletters in our Newsletter Archive. See what we’ve been up to recently, and if you are member who’s not opted in to the newsletter, sign up today. MONTHLY MUSINGS Have you been told, “But you don’t look sick”?  You’re not alone.  In our November newsletter, we mentioned how many of you use “The Spoon Theory” to describe the realities of your condition to others.  From MS to fibromyalgia to depression, “The Spoon Theory” has become such a popular analogy that it has its own forum tag. The idea is that patients living with a chronic illness have only a small number of spoons to use each day.  As a result, they must carefully choose how they expend their energy, as each task or effort costs one spoon.  If they use up all their spoons too early, that’s all they can manage for the day.  The drawer of spoons is empty. If you’ve found “The Spoon Theory” helpful in getting friends …

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Our Pledge to You, the Patient

“We founded PatientsLikeMe on the concept that sharing health data could lead to a more empowered patient and better overall healthcare system. It’s an exciting and giant step forward for us as an industry as we unite around making health data more accessible to those that matter most – the patients.” – Ben Heywood, PatientsLikeMe Co-Founder, President Today the first-ever Consumer Health IT Summit is taking place in Washington, DC. Sponsored by a division of the US Department of Health and Human Services (HHS), this new initiative is designed to empower individuals to be more engaged in their health through the use of health information technology (IT). During the summit, both government health agencies and private sector organizations like PatientsLikeMe will be highlighting the ways they plan to support your access to electronic health data. For example, HHS Secretary Kathleen Sebelius unveiled new proposed rules that would expand the rights of patients to access their health information as well as a model privacy notice template that can be used in the process. In addition, HealthIT.gov, a new resource for consumer health empowerment, was announced. PatientsLikeMe is participating in this important initiative by making our own pledge to you, which we …

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PatientsLikeMe – Out & About and OnCall

The PatientsLikeMe team has been traveling around the globe recently talking about the power of real-world patient data in changing healthcare.  You may have heard about our executives at industry conferences, government hearings, or even on TV.  Highlights below. Last month, PatientsLikeMe Co-founder and President Ben Heywood was on Fox Business News talking about how industry is engaging directly with patients and tuning into the “unvarnished truth” patients are sharing about their real-world disease experiences. Watch the latest business video at <a href=”http://video.foxbusiness.com/” mce_href=”http://video.foxbusiness.com/”>video.foxbusiness.com</a> Earlier in March, we launched our PatientsLikeMeOnCallTM podcast series to bring to you our leaders’ perspectives on topics that impact you, the patient, and the healthcare industry as a whole.  We kicked off the series with Ben’s interview regarding Fast Company recognition.  You can check out that one and the rest of our podcasts on iTunes or click on the links below to start listening to a specific interview.  As podcast host Aaron Fleishman says, “thanks for stopping by and listening and we’ll talk to you next time.” Listen | Ben Heywood (Co-founder, President) answers questions about the launch of our new organ transplants community and our collaboration with Novartis Listen | David S. Williams III …

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