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 making the answers more accessible, but I was happy to reflect on how our growing community of 180,000+ patients is already becoming more involved in their care by sharing their symptom and treatment data with each other.

Here were two other key takeaways from the workshop, as well as a look at how PatientsLikeMe is addressing each issue:

1. Patients need more information – and better information.

We heard that patients don’t have enough information, and they don’t know how to use the information they do have. Research articles are convoluted, access is limited, options aren’t presented; and as we heard from rheumatoid arthritis (RA) patient Kelly Young, who writes the blog RA Warrior, textbook definitions may not apply to everyone.

In contrast, our PatientsLikeMe community is sharing what’s normal to them, helping others interpret and digest research and creating a real-world database of what is actually going on with their health conditions. That way, members can learn the different treatment options and disease courses, discover the questions they haven’t yet thought about, and decide what’s right for them.

2. The entire doctor/patient culture could use a tune-up.

There was a massive call for a “culture change” in many areas of healthcare, including the way clinicians and patients interact. Jeff Belkora from the University of Califormia, San Francisco, and his team of pre-medical interns shared how having an advocate can make a big difference in doctors’ appointments. For example, an advocate can help you define your questions, actually ask them in the office and be an active participant in making decisions about your care.

While some argue the culture change needs to come from both patients and clinicians, PatientsLikeMe members are already taking huge leaps in demanding to be heard. Members are sharing that it’s okay to fire your doctor, learn from others the right questions to be asking and arrive at doctors’ appointments with your own data in hand, including PatientsLikeMe’s handy Doctor Visit Sheet.

Overall, it was great to see so many people focused on making healthcare better, and that all of these various groups are looking to other consumer models for best practices. I truly felt that the workshop attendees were dedicated to listening—and finding new ways to listen—to families and patients in the name of better care.

What did PatientsLikeMe member Laura Phillips think of the IOM workshop?  Check out her take.

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 future, we’ll be revealing results from a new patient survey aimed at uncovering the emotional and physical effects of psoriasis, a chronic autoimmune condition. Keep your eyes out for an in-depth post with those results!

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 to jog your memory and get your doctor updated quickly.

The DVS now includes your InstantMe history along with all the helpful notes you’ve made about things like treatment changes and new or repeat symptoms.  Bottom line: the more you use InstantMe, the more details you’ll have about how you’ve been feeling – and why.

Are you due for an “annual”?  Customize and print your DVS here.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

• Anyone tried trigger point injections? (Neurological Room)
• Muscles reacting badly to exercise – help! (PatientsLikeMe Room)
• I may look normal, but I feel so alone (Mental Health Room)
• Treatment or no treatment – that’s the question (Epilepsy Room)
• Newly diagnosed and feeling overwhelmed (FM/CFS/ME Room)
• Any ideas for cognitive difficulties? (MS Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

PUTTING THE “INSTANT” IN INSTANTME

Did you know there’s a mobile version of InstantMe that’s now available for iPhone, iPad and, most recently, Android users? We hope it’s a convenient way to record how you’re feeling on the go – whether you’re in the line at the store or watching your child’s soccer game.  Stay tuned as we continue to improve Mobile InstantMe in 2012.

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 and family to understand, you may be interested to hear there’s a new (and quite humorous) companion analogy called “The Fork Theory,” developed by MS member OldSalt. Unlike spoons, forks are not something to cherish, but the very things that cause you pain and discomfort.  Every day, the forks poke you, get in the way and pose challenges.  You can try to put them in a drawer, but they’ll always return when you least expect.

Can you relate to this notion of “battling forks” throughout your day?  If so, perhaps your friends and family can too.

- Kate, Emma, Liz, Jeanette & Sharry

JOIN THE CONVERSATION

What’s happening in the forum?  Check out some of these active threads below.  Then jump in with your own questions and answers.

• Coping with worsening memory (Epilepsy Room)
• What types of exercise work for you? (Parkinson’s Room)
• Celebrating 30th transplant anniversary (Transplants Room)
• I love when my caregiver…(fill in blank) (ALS Room)
• Stopping methotrexate, starting Enbrel (Inflammatory Room)
• When others use the handicapped toilet (MS Room)

Need help with something on the site?  Visit the PatientsLikeMe Site Help Room for answers from veteran members.

FIND PATIENTS LIKE YOU

The new Tools section (found in your profile sidebar) contains some oldies but goodies like your 3-Star Guide and Doctor Visit Sheet.  But it also has some new additions like Patients Like Me. This is where you can see a match up of all the patients who are like you and explore their recent activity.  It’s also the easiest place to find new members to follow.  (Looking for even more people to follow? Invite Others to join PatientsLikeMe.)

“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 are committed to completing by spring 2012.

“We pledge to make it easier for individuals and their caregivers to have timely access to their health information in a convenient, useable format through our website.  As we continue to encourage and enable them to use this information to improve their health and their care, we pledge to:

1) improve patients’ accessibility to their personal health information by making our Doctor Visit Sheet (a document detailing an individual’s health data and experience) downloadable through multiple formats, including electronically readable formats like PDFs and the “Blue Button” ASCII text standard format;

2) encourage patients to dialogue with their peers and providers about the benefits of accessing and understanding their health data;

3) continue “Putting Patients First” by building a website that helps them to share, access and learn from their health information online.”

What’s a Blue Button, you ask? An open government initiative, Blue Button represents a collaboration between the Veteran’s Administration and HHS to develop an online feature that would enable Veterans and Medicare beneficiaries to easily read, use and share their personal health information with providers and others they trust. The ASCII text file format was selected for its ease of use by individuals, while allowing computers to easily “read” the information.

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.

Earlier in March, we launched our PatientsLikeMeOnCall^TM 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 (Chief Marketing Officer) shares industry best practices in using social media for clinical trial recruitment (recently presented at the CHI SCOPE conference)
• Listen | Paul Wicks Ph.D. (R&D Director) discusses nexus of personalized medicine and information technology (highlights from his presentation given at a Personalized Conference event by ASU, Mayo Clinic, AAAS, FDLI)
• Listen | Jamie Heywood (Co-founder, Chairman) visits “on call” to talk about the impact of real-world experience on drug safety
• Listen | Sally Okun RN (Health Data Integrity Manager) gives her perspective on improving patient engagement and fostering patient-provider partnerships through tools like the Doctor Visit Sheet (highlights from her presentation at the Patient E-Centered Health event by The Stevens Institute of Technology)
• Watch | Maureen Oakes (Product Manager) shows you cool new website functionalities making their debut with the new transplants community
• Watch | Paul Wicks Ph.D. (R&D Director) talks about the value of patients measuring quality of life through online patient-reported outcome