6 posts tagged “Doctor Visit Sheet”

Partnering with Patients to Improve Healthcare

Posted March 8th, 2013 by

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.

IOM Workshop - Sally and LadyMac

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.

IOM Workshop - Sally and LadyMac from Right Side

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.

PatientsLikeMe member emorgan


PatientsLikeMe Exhibits at the American Academy of Dermatology Summer Meeting

Posted August 24th, 2012 by

The American Academy of Dermatology Summer Academy Meeting Took Place Last Week in Boston - and PatientsLikeMe Was There!

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..

A Glimpse of the PatientsLikeMe Booth Before the Attendees Arrived

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!

PatientsLikeMe member ccydylo