5 posts tagged “IOM”
Public Service Announcement-Style Video Calls Patients to
“Donate Your Data for You. For Others. For Good”
CAMBRIDGE, MA – March 10, 2014 – Today, PatientsLikeMe kicks off a new campaign promoting the value of sharing health information to advance research. In a series of public service announcement-style videos, the company highlights a movement called “data for good,” which underscores the power of donating health data to improve one’s own condition, help others and change medicine.
“This year marks the 10-year anniversary of when our co-founders first introduced the idea that openness in healthcare is a good thing, and should be encouraged and celebrated,” says Michael Evers, Executive Vice President of Marketing and Patient Advocacy at PatientsLikeMe. “The ‘data for good’ campaign is our way of tipping our hats to the massive amounts of data that our members have shared to date. It’s also meant to inspire more people to contribute their experiences to accelerate research.
In the video series, PatientsLikeMe co-founder Jamie Heywood walks people through the journey of being diagnosed with a life-changing condition and frames the underlying problem in creating a patient-centric healthcare system. He then asks everyone to participate in a movement around health data donation – “join us in this amazing journey to make your data, your experience drive medicine”.
This campaign launches on the heels of a recent paper published by the Institute of Medicine (IOM) highlighting a PatientsLikeMe survey focused on people’s willingness to share health information to change medicine. According to survey results published in the paper, 94% of U.S. adult social media users with a medical condition agree with sharing their health data to help patients like them and should be used to improve the care of future patients.
“Sharing helps me track important health information and improve research about this disease. If I am willing to be transparent, hopefully others will be inspired to do the same,” says Starla Espinoza, a member of PatientsLikeMe since 2008, joining just months after her multiple sclerosis diagnosis. Starla represents one of more than 250,000 members who are donating their disease data to research on PatientsLikeMe. To date, the community has contributed more than 21 million structured data points about their disease experiences including treatment and symptom reports, demographic information, health outcome surveys, lab data and more. In a recent study focused on sleep issues, PatientsLikeMe was able to pull more than 5-years worth of data to analyze from its platform – including over 184,000 symptom reports previously shared by 65,000 chronically ill patients. The company then ran an additional survey to collect more data and received 5,000+ responses in less than two weeks.
PatientsLikeMe’s “data for good” campaign will blanket all of its social media channels and invite people to join the movement (#dataforgood). “Your data has a heartbeat that gives new life to medical research and a better future to someone like you,” says Heywood.
Anyone can join PatientsLikeMe and share their experiences to help others while helping themselves. To learn more, go to www.patientslikeme.com/dataforgood.
PatientsLikeMe® (www.patientslikeme.com) is a patient network that improves lives and a real-time research platform that advances medicine. Through the network, patients connect with others who have the same disease or condition and track and share their own experiences. In the process, they generate data about the real-world nature of disease that help researchers, pharmaceutical companies, regulators, providers, and nonprofits develop more effective products, services and care. With more than 250,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 40 peer-reviewed research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.
Last Friday we heard from PatientsLikeMe Head of Community Liz Morgan about her experiences at the Institute of Medicine’s Partnering with Patients workshop. Today we hear from multiple sclerosis (MS) patient Laura Phillips, a PatientsLikeMe member who spoke at the event.
As a speaker at the workshop, Sally Okun, PatientsLikeMe’s Health Data Integrity & Patient Safety Director, invited me to speak for the patients of PatientsLikeMe as her co-presenter.
I had everything worked out to exactly what I wanted to say and right in front of me so I wouldn’t forget, but I couldn’t tell you what I even said. LOL. I know I didn’t want to look down and read, it needed to come from the heart and what I could remember. I thought I’d freeze and not be able to say a word, but after introducing myself I felt really comfortable with looking at the audience and speaking. Even with Liz Morgan, Head of Community at PatientsLikeMe, taking pictures, I was able to talk.
There was a large, diverse group of people attending and presenting. I wish I could do a better job of portraying the event, but it was large. Healthcare, patients and families were the subjects of the workshop. Lots of ideas were put forth on everything from how to improve the healthcare system to how to make patient records available to the patients electronically, such as recording doctor visits and putting them on a CD for the patient to keep and play for other family or friends who were not at the appointment.
Recording doctor visits is something I’d love to see. How many times have you left the doctor’s office and each person present remembers the visit differently? Or you can’t remember if you discussed a particular test or not? I did push the importance of the patient keeping hard copies of ALL tests, doctors’ notes, you name it, get a copy. I would love to see the ability of viewing my records electronically so I could view my results quicker, make notes to ask the doctor, etc. There was also talk of submitting questions for the doctor in advance for the doctor to review and be more prepared for the visit. Also, the staff would print a copy of your submitted questions so you would have it in hand and remember what to talk about.
There was way too much to compress into a brief review of the event, but there were a lot of really good, logical ideas presented. How many of the things discussed will eventually become a reality? Only time will tell. Privacy will be a major roadblock I fear. Everyone that I heard talk did agree that collecting data from the patients themselves was important, and PatientsLikeMe was mentioned more than once by others there.
Sally and Liz were a delight to meet and spend time with, as we are all passionate about PatientsLikeMe and how it has helped many of us through the years. Really had a great time, and I wish I could have spent more time with Sally and Liz, but the time we did spend talking was productive and invaluable.
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.
Today’s guest post is written by PatientsLikeMe Vice President for Advocacy, Policy and Patient Safety 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.