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.
When you are diagnosed with a life-changing illness, your doctor may prepare you for how the disease will affect your physical functions. But as our members point out, patients also need to be prepared for the changes in physical appearance they may experience. For example, how do you deal with hair loss, facial swelling, weight gain, blotchy skin or other unexpected changes? Or get comfortable with the use of new equipment such as leg braces, walkers or wheelchairs that may attract attention? Most importantly, what can you do to still feel beautiful?
Here are some suggestions from members of our PatientsLikeMe Forum, where patients with different conditions come together to discuss universal issues:
Using attractive scarves or hats to cover thinning hair or bald spots
Experimenting with different cosmetics to see what works best
Treating yourself to a spa manicure and pedicure as a pick-me-up
Trying out different explanations for your new brace/walker/wheelchair when asked to see what feels right and what produces the most acceptable responses
Soaking in a scented Epsom salt bath to ease pain and relax
Consulting with a hair stylist about better styles for thinning hair
Using gentle, non-drying facial cleansers and lotions
Switching to an electric razor to improve ease and safety
Donating your hair to Locks of Love to put a feel-good spin on it
Have you discovered other tricks to help you deal with a changing appearance? Join this ongoing discussion in our forum or share your experiences in the comments section.
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.
Last year, over 170,00 patients learned from each other’s shared experiences every day on PatientsLikeMe. In 2013, we promise to continue putting the patient first. We’ll provide better, more effective ways for sharing real-world health experiences that help you, other patients like you, and organizations that focus on your conditions.
You’ll hear us talk more than ever this year about living better, together. What does that mean to you? As we kick off 2013, just know this…what inspires us most to live better, together is YOU.
Can you be friends with someone you’ve never met in person?
The members of our online health community – now 170,000+ patients strong – think so. In fact, many of them say they depend on other members for support and encouragement, and for the all-important reminder that they are not alone.
As evidence, here is a touching poem written by a newer PatientsLikeMe member. Although he wishes to remain anonymous, he says that he wrote the poem to “uplift people who feel like no one understands them.”
You’ve all heard the phrase “use it or lose it” before. But should it be applied to patients with chronic, debilitating illnesses? That’s an ongoing debate in the PatientsLikeMe forums. Take for example this discussion of cognitive difficulties in our Multiple Sclerosis Forum.
On the one hand, there’s the argument that brain exercises such as word games can help you recover or improve cognitive skills. For people who like the idea of challenging themselves to stay as sharp as possible, the phrase can be a motivating call-to-action. Others, however, are bothered by the phrase as they feel it implies that cognitive decline is the patient’s fault. Or that it makes it seem like “using” can stop the “losing,” which could be misleading in many cases.
Overall, this controversy is one that can help can help friends, family and the public at large be more sensitive to those with cognitive challenges due to their health condition. “Brain fog” is a common symptom of numerous chronic diseases, including multiple sclerosis and fibromyalgia. While there’s a natural instinct to encourage loved ones, it’s important to remember that every patient’s journey is an individual one, and no amount of “using it” can necessarily prevent cognitive symptoms.
What everyone seems to agree on, however, it that brain games and memory exercises certainly can’t hurt. What do you think? Join the discussion in our forum or share your thoughts in the comments section.
“There is still no cure, but at least now, thanks to these fundraising events, there are advancements in patient care, and there is hope.” - Multiple sclerosis (MS) patient Judy
It may be winter now, but plans for next year’s disease-related fundraising events are underway. The question is: will you be taking part?
For inspiration, see Judy and Jim below in their bright blue PatientsLikeMeMe t-shirts before the start of Walk MS in Cranford, NJ, on April 15, 2012. “When I was first diagnosed over 20 years ago, there were no therapies for MS patients and knowledge was limited,” says Judy. “We’re grateful to PatientsLikeMe for their continued support for events that raise awareness and funds for MS research.” She adds that the Cranford Walk MS event had “a large and enthusiastic turnout.”
Congrats to Judy and all of our PatientsLikeMeInMotion-sponsored teams for your efforts. For more PatientsLikeMeInMotion team photos, check out our growing Flickr collection. Thinking about organizing a team for next spring? Learn how the PatientsLikeMeInMotion program can help with t-shirts and a monetary donation.
For many newly diagnosed patients, accepting help can be as difficult as accepting the diagnosis itself. According to some of the members of our Parkinson’s disease community, here are a few signs that you may be struggling with the idea of becoming someone who might need help.
Have you found yourself feeling resentful when family, friends or strangers try to assist with something?
Have you resisted using a complimentary wheelchair (e.g., at the airport or on cruise ship) out of embarrassment?
Have you worried that becoming someone who receives help is going to change your lifelong identity?
If you answered “yes” to any of these questions, you are far from alone. Many PatientsLikeMe members report that learning to accept help gracefully is one of the most challenging aspects of chronic illness. And it’s not just allowing the help itself, per se, but seeing yourself in a new light, as one member puts it. It’s not unusual to take great pride in being a superman or superwoman, the type of handy, resourceful person who does it all and is always helping others in the family or community. This can be part of your self-image, as well as a source of self-esteem.
So what do you do when you are suddenly the person being helped instead of the helper? It requires a psychological shift, according to our members, that involves letting go of ego and viewing the care and assistance you are receiving as a gift, not an insult. It also means communicating frequently and lovingly about the issue, so as to address “the elephant in the room.” If you can manage the task yourself, speak up and say so politely, advises one patient. Otherwise, practice saying “thank you” and “I love you” with gratitude, encourages another member. Ultimately, as our members state over and over, the best tools for coming to terms with the realities of your new life are a positive attitude, humor and support from others like you.
Can you relate to this common hurdle? Join this insightful discussion in our forum or share your thoughts in the comments section.
Is there a caregiver in your family? For example, someone who looks out for an elderly parent or grandparent – or who cares for a child or spouse with a debilitating illness?
November is National Family Caregivers Month, a time for recognizing the important role of family caregivers in our society as well as the challenges they face on a daily basis. Currently more than 65 million Americans (or approximately 29% of the US population) are serving in a caregiver role in any given year, averaging 20 hours per week. Approximately 66% are women. The value of services these caregivers provide for “free” when caring for older adults is estimated to be $375 billion per year.
Yet what many people may not think about is the economic and health impact on the family caregiver. Financially, caregiving families have median incomes that are 15% lower than non-caregiving families, and women caregivers are 2.5 times more likely to live in poverty than non-caregivers. In terms of health and well-being, approximately 40 to 70% of caregivers report clinically significant symptoms of depression, according to one study, while 55% say they skip doctor appointments for themselves. Read other eye-opening caregiver statistics here.
PatientsLikeMe strives to support and involve caregivers with our “CareTeam” concept, which was developed to include everyone who participates in the care of our patient members. That could be a spouse/partner, parent, child, doctor, therapist, home health worker, sibling, relative or friend. Patients can invite caregivers to join PatientsLikeMe, and once they are members, send them a CareTeam invite to link together their profiles. That way, both the patient and caregiver can stay abreast of how the other is doing physically, emotionally and socially.
Currently, there are more than 7,000 caregivers registered with PatientsLikeMe, many of whom are active users of our forums, who chart their own symptoms and treatments and who are seeking information, guidance and support directly from patients or other caregivers. Browse their profiles – even if they have no specific health issues, caregivers can monitor their well-being with tools like our InstantMe and Quality of Life surveys – and find out what their life is like today.
It may seem counterintuitive, but according to some of our members, there are actually some good things that can come out of being diagnosed with a serious illness. In the spirit of Thanksgiving – a time when many people are reminded of all the things they have to be grateful for – we thought we would share some of our members’ uplifting sentiments.
Learning to never judge a person by only what you see
Becoming more patient and not taking anything for granted
Filtering out fair-weather friends and uncaring partners
Having extra motivation to live the healthiest lifestyle possible
What about you? Have you noticed some positive takeaways from your illness? Share them in our comments section in honor of Thanksgiving. And, from everyone at PatientsLikeMe, we wish you and your loved ones a wonderful holiday!
Access to Doctors’ Notes Aids Patients’ Treatment A new study finds that patients better understand their condition and feel more in control when they can read their doctors’ notes (something you’re legally entitled to access).
Why We Need Ecological Medicine Do we need exposure to a diversity of bacteria and germs for optimal immune health? A thought-provoking essay about the “germ theory,” “hygiene hypothesis” and more.
Coming Next: Using an App as Prescribed A New York Times piece about whether healthcare apps – now regulated by the FDA – could reduce costs and change the way we monitor health.
Mining the Internet for Speedier Alerts on Drugs The Wall Street Journal examines the results of a study showing that Internet search algorithms can detect adverse events for certain drugs ahead of FDA warnings.
On October 9th, Bloomberg TV aired a four-and-a-half minute “Innovators” segment profiling PatientsLikeMe’s journey as a company. Filmed partially in our office in Cambridge, Massachusetts, the piece features PatientsLikeMe Co-Founder and Chairman Jamie Heywood as well as Ed Sikov, a PatientsLikeMe member with Parkinson’s disease. Our thanks go to Bloomberg’s Nicole Lapin for her in-depth coverage of our evolution into a data-sharing platform that, as she puts it, “functions more like a clinical trial.”
Watch the Bloomberg TV profile below:
Visit our Press page for other recent PatientsLikeMe media highlights.
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.
Because blogging a clinical trial from start to finish was unheard of, I attracted the interest of not only patients, but those in charge of clinical trials. They are interested in the impact of social media on clinical trials, and how they can utilize it to their benefit. Sites such as personal blogs, Facebook, Twitter, and PatientsLikeMe are here to stay and people naturally want to share information.
I got a direct message on Twitter from Craig Lipset, who is Head of Clinical Innovation, Worldwide Research & Development for Pfizer. Social media brought us together to have a conversation about research that never could have taken place before the Internet. Everyone is more connected and approachable now. Naturally, I blogged about it.
But that was just beginning. Tomorrow, September 14th, at 9:45 a.m., I will be speaking along with Craig at the Disruptive Innovations conference, where the leaders in pharmaceutical research will be gathering to share ideas and come up with innovative ways of conducting clinical trials that take the “ePatient” into consideration. The 30-minute segment is entitled “Patient Leaders as Key Stakeholders in Clinical Trials,” and I will be there to represent – and put a human face to – clinical trial patients everywhere.
Knowing this is a chance of a lifetime for a trial patient to have the researchers as their audience, I wanted to reach out to those who have participated in past or current trials. My question to them is: “If you could ask or tell researchers just one thing about your own experience as a trial patient, what would that be?”
I plan to attend this conference and speak on behalf of all patients and put a face to the humans behind the data. I want to show them that we are connected now more than ever by social media. Researchers need to harness that power to their benefit. Soon they may use it to recruit and retain trial participants. I would like to see them provide a monitored gathering place for these trial patients to reduce the spread of misinformation as patients share data.
To people who are considering a trial I recommend using tools like PatientsLikeMe and ClinicalTrials.gov to stay informed about ongoing research and find a doctor willing to support your interest in participating. Remember that not every trial will culminate in a drug that wins FDA approval. By joining a clinical trial you will be taking risks, but you may also be reaping benefits long before the general public will have access to the drug. Never forget that you are a pioneer and by entering a trial you are giving the greatest gift possible. Without volunteers we would have no medical advancements.
I hope that researchers never forget the impact they are having on the lives of people everywhere. They aren’t just going to work every day; they are the makers of miracles. Often patients are joining these trials as a last resort. The work of researchers gives us all promise for a brighter future.
I hope that patients everywhere will take one clear message away from this: NEVER GIVE UP! It would have been so easy that day to end it all. I was depressed and certain my life could get nothing but worse. But, by choosing to fight, I have changed my life forever and doors continue to open for me. By reaching out through social media I know I am not alone. You never know what tomorrow may bring, so don’t give up on today!
Today’s guest post is written by PatientsLikeMe member Jeri Burtchell (TickledPink), who has been living with multiple sclerosis (MS) for 13 years. A tie dye apparel store owner and mother of two, she writes a blog entitled “Gilenya and Me: My Story of Being an MS Patient, a Hypochondriac and a Guinea Pig.” Her patient advocacy and social media presence led to her being invited to speak the Disruptive Innovations conference taking place in Boston this week.
One rainy day in April 2007, I was lying in bed, staring at the ceiling, talking myself out of suicide. I was having another MS relapse. This time it was attacking the part of my brain responsible for controlling emotion. As a result I was having panic attacks almost daily. Along with the emotional issues, I was also having trouble walking and horrible spasticity.
I had been diagnosed with MS for eight years at that point and, although I was on one of the FDA approved treatments, I was continuing to relapse three to four times a year. It felt like standing in the ocean; every time I would stand up and catch my breath, another “wave” of MS knocked me back down.
Deciding against suicide, I made some proactive choices that led to my meeting with the lead investigator of the Fingolimod (now marketed as Gilenya) clinical trials in Jacksonville, Florida. At my first appointment we discussed the Fingolimod trial called TRANSFORMS. I took the informed consent document home and went over all the risks and benefits with my family. After extensive baseline testing, I officially started the trial on August 20, 2007, a.k.a. “Randomization Day”, when I received my first dose of medication. I would return for regular testing many times over the next several years.
Joining the trial changed my life. I was very fortunate that I did not suffer any major side effects, and I am happy to say that my last MS attack to date was the very one which led me to contemplate suicide that day in April 2007.
I was fascinated by the research during the trial. They did a lot of testing, and I have never felt more assured that my overall health was being tracked, observed and cared for as I did in the clinical trial. Since I did not have medical insurance, this was a plus on top of benefits I might be getting if on the real drug.
When the trial began, I wanted to know what to expect. I tried searching the Internet for a clinical trial from a patient’s perspective and could find nothing. I decided to share my experience with the world so others considering a trial might have their own fears put at ease. Thus my blog, www.gilenyaandme.com, was born.
I blogged all of my checkups and along the way something unexpected happened. Many people wrote to thank me for being the reason they felt able to overcome their own fears and join a clinical trial. We began connecting and sharing our personal experiences in a way only the Internet could enable.
At PatientsLikeMe, people with every type of condition are coming together to share their health experiences, find patients like them and learn how to take control of their health. The result is improved care for patients as well as an acceleration of real-world medical research.
Stay tuned to our blog for the latest happenings with our company, our patients and our mission of opening up the healthcare system.
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Conferences/Events, Multiple Sclerosis, Openness 
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