Are medical facilities prepared to meet the needs of disabled individuals?  It would seem reasonable to think so, but according to PatientsLikeMe members, that’s not always the case.

For example, consider the case of a female patient using a powered wheelchair who doesn’t have the upper body strength to transfer herself out of the chair.  How does she transfer from the wheelchair to an exam table, dentist chair, mammogram booth or even a weight scale in the doctor’s office?  Assistance is required, yet according to our members, some medical facilities and doctor’s offices claim they cannot provide assistance due to liability issues (e.g., the risk of being sued by the patient or the risk of a worker’s comp claim due to a staff injury).  So what’s the patient to do?

In a discussion in our Multiple Sclerosis Forum, patients with multiple sclerosis (MS) posited that the only immediate solutions appeared to be asking the provider to meet the patient at a nearby hospital (which not all providers will agree to do), changing providers (which is not always easy given insurance networks and geographic location), or switching to home healthcare (which can mean not getting to see your provider in person).  None are ideal.  In comparison, other patients report that their medical facilities, including Veteran’s Administration (VA) hospitals, offer assistive equipment such as mounted ceiling lifts, slings and HoverMatts to facilitate safe wheelchair transfers.

Should all medical facilities be required to have these types of accommodations? Is it discrimination if they don’t? Share your thoughts and experiences in the comments section.

Today’s guest post is written by PatientsLikeMe Health Data Integrity & Patient Safety Manager Sally Okun, RN, MMHS.

Getting health care can often feel like you’re trying to put together a difficult jigsaw puzzle, only to find that some of the pieces are missing. Even under the best circumstances, navigating the health care system is challenging for patients like you and your caregivers.  Worse, when health care is provided in an uncoordinated and fragmented way, the quality of care and patient safety can be compromised.

These are all reasons the idea of “team-based care” is gaining momentum, and emerging as an important factor in helping patients better manage their conditions. For the past year, I’ve been honored to be part of a working group commissioned by the Institute of Medicine (IOM) to write a discussion paper on this topic.

Our team, made up of health care professionals and leading academics from the University of Washington, American Medical Association, Rush University Medical Center, American Academy of Physician Assistants and American College of Clinical Pharmacy, pulled together all that we learned during our monthly meetings, interviews with teams from around the country and input from national experts on “team based care.”  The result is a co-authored paper, published this week, by the IOM.

Among the goals we have at PatientsLikeMe is to amplify your voice – the patient voice – in relevant and system-changing initiatives and bring what we’re learning back to you.  As I share with you now the five hallmarks of the most effective teams, I want you to know that much of what we discussed is how you, the patient, are at the center of these teams.  Your needs, preferences and concerns are central to the team’s work.

So, what do you need to assemble your very own “A Team” for healthcare?

Shared and well-defined goals: Patients like you and, where appropriate, family members or other support persons, must work to establish shared goals that reflect your priorities.  Be sure your goals are understood and supported by all your team members.

Clear roles:  Each member of your healthcare team has specific responsibilities. Clear roles help all members of the team share the load, so the team can accomplish even more together than one can accomplish on their own.

Mutual trust: To reach your shared goals, it’s really important for you and the members of your team to earn each other’s trust.  Without this trust among the team it can be difficult to work well together

Practiced communication: Good communication takes practice and even the best teams continuously work on ways to improve this.  With all of the tools we have to communicate today, be sure your team knows what you prefer  – in person, on the phone, via email or text, etc.

Measured processes and outcomes: As you and your team create your healthcare plan, be sure it includes ways to measure how well you’re doing on meeting your goals. This translates to better care, and potentially, better results.

Note: The IOM working group was honored that the Journal of the American Medical Association (JAMA) asked it to contribute a Viewpoint piece on team-based care, highlighting the role of the patient on teams. You can see the Viewpoint piece, published today, here.

How serious is the U.S. Department of Health and Human Services’ Office of the National Coordinator for Health Information Technology (ONC) about increasing patient safety?   So serious that they are running a contest challenging the best and brightest developers to create a platform that makes it easier to report a patient safety event electronically.

The Reporting Patient Safety Events Challenge is offering $70,000 worth of prizes, with $50,000 (and a demo opportunity) awarded to the first place winner, $15,000 to the second place winner and $5,000 to third place winner.  The submission deadline is August 31, 2012.  Learn more about the contest guidelines and 30+ participating developer teams here.

“Ideally, we would live in a world of optimal care delivery,” says the ONC.  “Physicians, nurses and care delivery organizations across the country are continuously working to minimize and eliminate errors.  But, until this ideal world exists, we need to invest in infrastructure that helps enable better care quality, risk management and shared learning – all to ensure better care for patients.”

PatientsLikeMe fully supports this goal, which is why we introduced our first-of-its-kind adverse event reporting platform in 2009.  As part of a two-year pilot program, our members with multiple sclerosis (MS) were able to submit adverse events related to a medication, medical product or medical device directly to the U.S. Food and Drug Administration’s MedWatch program through PatientsLikeMe.  Our system automatically pulled relevant data from the patient’s profile into a FDA 3500 form, dramatically reducing completion time.

Since then, we’ve also developed an integrated and comprehensive drug safety reporting platform that monitors patient data for potential adverse events when we are collaborating with a sponsoring partner in designated disease areas. These data are then clinically triaged and curated using the Medical Dictionary for Regulatory Activities (MedDRA), an industry standard terminology. Adverse events are submitted to our partners electronically in FDA 3500A format to meet regulatory timelines and reporting criteria.  Of note, PatientsLikeMe is the only online health data platform in social media that has successfully passed multiple drug safety audits conducted by our partners’ pharmacovigilance and drug safety experts.

What’s the difference between patient safety and drug safety?  And what do we see ahead in this critical area of healthcare?  Tune in to a podcast with PatientsLikeMe Chairman and Co-Founder Jamie Heywood on this very topic.

Every Friday, PatientsLikeMe holds “Journal Club” in our Boston headquarters with a different guest speaker. Last week we were privileged to hear from Dave Hale, Project Manager for Pillbox, a National Library of Medicine (NLM) and Federal Drug Administration (FDA) patient safety initiative. And thanks to PatientsLikeMeOnCall’s new podcast series “It’s Friday – Let’s Journal Club,” you’ll get to hear from him too.

After Journal Club last week, PatientsLikeMe’s Aaron Fleishman sat down with Hale to learn more about Pillbox’s goal of creating a one-stop resource for identifying unknown pills as well as how the project aligns with the Open Government Initiative enacted by President Obama. Tune in below to hear how Hale and his team took drug labeling data from “open to actionable” by listening closely to affected communities.

“What are the things that affect a patient’s safety? It’s everything – it’s not just whether the drug is good or bad, it’s the whole process.” –Jamie Heywood

Why does the healthcare industry need to shift from drug safety to patient safety? PatientsLikeMe Co-Founder and Chairman Jamie Heywood explains his view in this week’s edition of our podcast series entitled “A Look Ahead.”

No stranger to this topic, Jamie has written about patient safety on our blog before.  ”By using structured data collection tools within the PatientsLikeMe platform, overseen by a drug safety professional, industry partners can improve patient safety,” he wrote.

In this edition of PatientsLikeMeOnCall^TM, Jamie discusses the difference between drug safety and patient safety, why it is so important for the healthcare system to adapt more to patient safety and what this shift would mean for the future of healthcare.  He also makes the case for why pharmaceutical manufacturers need to follow up on any drug safety events when a new treatment has been developed.

To hear more, listen to Jamie’s full interview:

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 patients to voluntarily report adverse events that funnel to the FDA’s MedWatch system. Our system automatically pulls relevant data from the patient’s existing profile into an FDA 3500 form, dramatically reducing form completion time.

Going beyond that in areas where we work deeply with our pharma clients, we developed an integrated and comprehensive drug safety reporting platform that monitors patient data and free-text for potential adverse events. This data is then medically curated into standard MedDRA terminology and submitted electronically to meet regulatory timelines and reporting criteria. Of note, PatientsLikeMe is the only online health data platform in social media that has passed multiple drug safety compliance audits.

The reality today is that patients are sharing their real-life experiences with post-marketed drugs online. By using structured data collection tools within the PatientsLikeMe platform overseen by a drug safety professional, industry partners can improve patient safety.

This is about more than just compliance, though. We believe it’s about leadership – patients and pharma working together in new ways. Listening – to understand the positive and negative patient experience – is the right step in developing a trusted relationship. And this trust-based relationship is the only foundation upon which to build your social media strategy.