Patients as Partners: Doug on learning about himself through others

Posted July 27th, 2016 by

Next up in our Partnership Principles series is Team of Advisors member Doug (ducksixty). A writer and former actor, Doug tapped into his creative side and has shared a personal essay about Steve, a neighbor with fibromyalgia who unknowingly helped him realize something about his own experience with depression. Check out his story below and find out how Steve inspired him to look inward and re-evaluate what’s important: “I’m electing to dethrone the disease and reassert a part of my former self.”

Steve can barely move. Wants to, but he can’t.

A burly, silver-bearded, former long-haul trucker, he lives in the senior citizen one-bedrooms next door. Had to throw in the towel several years ago when inexplicable, undiagnosed joint pain made it impossible for him to drive safely. Retired early, Steve lives on a carefully-measured monthly Social Security payout. He knows enough to call what he’s got “fibromyalgia,” and he’s tried to get help for it in our rural, medically-underserved corner of California desert, but he simply doesn’t have the means. Even after Obamacare.

Every day, he shuffles out his front door, gingerly lowers himself into the folding chair outside his apartment entrance, and chats with passersby. All day. Won’t do ibuprofen anymore because of his kidneys; afraid of opioids, and can’t afford them, anyway. Steve’s only relief is a single beer, Sierra Nevada Pale Ale when he can afford it, each afternoon.

So I’m surprised when I overtake him on my walk to work last Tuesday morning, three blocks from home. Halting gait, for sure, but no cane, moving deliberately down Warren Street.

“What’s up? You okay?” I ask, hoping to learn what prompted his sojourn.

“Fibro’s been lettin’ up lately, and I’ve got a little extra cash,” he says. “Headin’ for the bike shop.”

He reads the question on my brow, and, before I can vocalize, explains, “I’m buying a used bike.” My question persists; I try to get my head around the thought of crippled-up Steve flying up a trail, or even simply coasting down the street.

“Think I might be able to ride again; figured it’d be more fun sittin’ my butt down on a moving bike saddle than sittin’ still dying on a fold-up chair.”

He smiles, wipes his brow, looks in the sun’s direction, squinting at the mountains. We move on slowly, chatting, down Warren toward town. I can tell he’s in pain, but I can tell he’s determined. And I can tell he’s excited.

………………………………………………………………………………………………………………………………………………………………………………

Winston Churchill’s “black dog” has pursued me since 1998, when I was thrust into my first major depressive episode by worries surrounding Y2K. I lost twenty pounds, I cried the night through in lieu of sleep, I had to daily reassure my kids that they weren’t the source of Daddy’s sadness. Couldn’t work, and confined myself to the bedroom. I held out on professional help for six months (macho bullpucky), on medical treatment and pharmacotherapy for eight. I lost a full year of my life that first time to ruminative inactivity. A year of my marriage, a year of my kids’ childhoods.

As the meds took hold and therapy helped me reclaim my confidence, I became a student of major depression. Learned about neurotransmitters, primal brain centers, PET scans, and diet’s effect on mood. Joined online support communities and found a site for logging my symptoms and other details. I sought out discussion of historic and current medication protocols and information on emerging electric/electromagnetic therapies. I even found academic papers that argued depression could be an evolutionary adaptation. In short, like scores of other PatientsLikeMe members, I became an expert on my malady.

But my Tuesday morning stroll with Steve raised big questions. Did I really need to be as expert as I had become? (Did I need even to be on the Team of Advisors?) My family had been strained enough dealing with the depression itself. Did the addition of a couple of hours, isolated, reading all of the latest on mental illness every morning provide more benefit than if I’d just spent that time with my wife or kids instead?

Steve, when presented with an opportunity, elected to act contrary to his disease. To ignore it. When his joints allowed, and while he still had reasonable strength and balance, he got back on the proverbial horse…or mountain bike. He didn’t spend the regained time, comfort, and strength his “remission” afforded learning more about his disease; he sought to regain a part of his former life, a part that provided him great pleasure. In my efforts to master my disease and feel like I had some control in a miserable situation, had I unknowingly shot myself in the foot?

Depression had to some degree taken me away from life; had studying the condition ad nauseam simply moved me even further from it?

I’ve been “coming back” now for some six years, after being gravely injured by a drunk driver, losing my marriage (and ready access to my three children), and enduring a years-long emotional decline that saw me into psychiatric hospitalization and a couple months’ worth of electroconvulsive and outpatient therapy. The post-ECT psych-drug regimen they’ve got me on now does a number on my emotional range (what range?) and plagues me with crappy side effects, and I’ve continued research to see how to abet my situation.

But I’ve increasingly become more Steve-like, too. Ventured back into relationships and found a wonderful partner. Travelled independently (first time in eight years) to NYC to see my daughter and her husband last fall — I even attended my first theatre in a decade (I had formerly been a professional actor). I’m a depressive, yeah, but I’ve decided — and Steve reinforced that decision — not to let that label serve as my singular definition. I’m still trying to start a bipolar/depression support group, still counseling and messing with my pharm cocktail, and still working with PatientsLikeMe as an advisor. But I’m trying not to succumb or obsess.

I believe other PatientsLikeMe folks might also benefit from auditing their day-to-day and learning where they’ve allowed their (totally understandable) prepossession with their condition to eclipse possibilities for a richer life. After Steve rearranged my thinking the other morning, I went home and read a one-man play I’d heard about from friends. I decided to perform it next fall. I’m working on rights, finding crew, putting together an agreement for using a local space, even thinking about the possibility of performing it in schools or on tour.

The fact that I’m depressed will shape the way my experience unfolds, but obsessing over it won’t preclude that experience altogether. I’m electing to dethrone the disease and reassert a part of my former self.

………………………………………………………………………………………………………………………………………………………………………………

Steve mounts his new used bike outside on the street. He’s fragile, even tottering, as he balances. He’s really slow, and I worry that he’s not wearing a helmet. But he moves determinedly up and down our block. He’s obviously in considerable pain, and his forehead is shiny with sweat. And the smile on his face tells me he’s undeniably happy, despite the challenges. So am I. I dive back into scoring my script.

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Sleep health: An interview with Dr. Lisa Shives from the National Sleep Foundation

Posted July 20th, 2016 by

 

How much do you know about sleep health? We’re digging deeper into how sleep relates to chronic illnesses in a new collaboration with the folks at the National Sleep Foundation (NSF), who are dedicated to improving health and well-being through sleep education.

To kick things off and share what NSF is all about, we sat down for a chat with board member Dr. Lisa Shives. Dr. Shives has extensive clinical experience treating sleep-related disorders like sleep apnea, insomnia, narcolepsy, restless legs syndrome, and circadian rhythm disorders. See what she says below about the role of sleep in medicine and how sleep quality affects other health conditions.

Tell us a little bit about what you do and how you became interested in the study of sleep.

I became interested in sleep disorders because I was so sleep deprived as a medical student and resident. That experience made me take sleep very seriously and deepened my empathy for patients with sleep problems.

What do you think is the biggest misconception about sleep disorders?

I think the biggest misconception is that people think that people with “sleep problems” (usually meaning insomnia) are just anxiety-ridden or Type A personality types. — that they just need to relax and get into some good bedtime habits and then they would sleep fine. For people who do not have sleep/wake problems, sleep is the easiest thing in the world. They can’t understand how elusive a good night’s sleep can be.

You’ve managed clinical research studies that focus on sleep disorders, the effects of diet and exercise on sleep, and metabolic and cardiovascular abnormalities associated with sleep disorders. What can you tell us about how sleep disorders affect other conditions?

We have known for years that sleep apnea increases the risk of cardiovascular disease, but now we have evidence that short or poor sleep for any reason also increases the risk of diabetes and weight gain due to the metabolic disturbances that are caused by poor sleep.

For you, what’s the most interesting part of your work? The most interesting discovery that’s come out of your work?

For me, the most interesting recent discovery is that poor sleep or even sleeping at the wrong time deregulates metabolic and hormonal processes. It’s a major contributing factor to the chronic conditions that make up the bulk of the disease burden in modern society: cardiovascular disease, hypertension, diabetes, and obesity.

What role is the study of sleep currently playing in medicine? And how do you see that evolving in the years to come?

I am happy to report that I see a growing awareness among my colleagues in the other fields that sleep is just as important as diet and exercise.

What’s your best piece of advice for patients living with sleep disorders alongside other chronic conditions?

Don’t accept that nothing can be done about your sleep problem. Just because it is common for people with your medical problem to have a sleep disorder does not mean that nothing can be done to improve your sleep/wake cycle and how you feel when you are awake.

Back in 2013, more than 5,000 PatientsLikeMe members participated in a survey about their sleeping habits, and we discovered that a bad night’s sleep is the norm for people with health conditions and that lack of sleep affects them far more than the general population. What are your thoughts on this?

As I said, just because sleep disorders are common among people with certain conditions, that does not mean that the sleep/wake cycle cannot be ameliorated. My advice is that patients should talk to their primary care physicians and sometimes seek out a trained sleep specialist to help them sleep better and feel more alive in the daytime.

 

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14 questions to ask before you enroll in a clinical trial

Posted July 18th, 2016 by

Have you ever participated in a clinical trial? How much did you know going into it? Our partners over at the Center for Information and Study on Clinical Research Participation (CISCRP) came up with a whole list of questions that will help you decide if a clinical trial is right for you before you commit.

Here are a few of them below, but you can check out the full list and a printable version here.

 

Got any questions you’d add to this list? Head over to the forum and share them with the community!

 

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PatientsLikeMe Names Marni Hall Senior Vice President

Posted July 11th, 2016 by

Former Director within the FDA to Spearhead Company’s Research and Policy Initiatives

CAMBRIDGE, Mass., July 11, 2016—PatientsLikeMe announced today it has appointed Marni Hall, PhD, MPH, as its new Senior Vice President of Research and Policy. A distinguished research scientist and public policy expert, Hall will develop and direct the strategies and teams focused on expanding the role of real-world evidence in precision medicine, and in the research agendas of PatientsLikeMe and its customers.

Hall joins the company from the U.S. Food and Drug Administration (FDA) where she was most recently Director of Regulatory Science within the Office of Surveillance and Epidemiology (OSE) for the FDA’s Center for Drug Evaluation and Research (CDER). In this role, Hall became an expert at sourcing and analyzing big data sets, including adverse event reports, claims, -omics, and other data useful to risk assessment and risk management activities. She led data management and program operations, as well as research and development efforts to identify, evaluate, and implement new data, tools, and methods to support regulatory decision making. Specifically Hall’s team explored big data sources such as the FDA Adverse Event Reporting Systems (FAERS) and the Sentinel Initiative, and led post-market safety studies and programs using observational data to gain insight into drug safety and drug performance.

PatientsLikeMe CEO Martin Coulter said Hall “will now apply her strategic research and operational expertise to help us work with our members and partners to use patient-reported data in new and innovative ways, so that the patient experience can lead to even more significant developments and discoveries, such as improved outcomes.”

According to Hall, the new opportunity allows her to continue to do research in a scientifically-rigorous and patient-centered setting. “PatientsLikeMe has been a critical force in documenting and analyzing real-life patient experiences and evolving the role of real-world evidence in clinical and public health research. My goal is to extend its impact, so that the patient experience drives a future where healthcare is able to emphasize individual needs and preferences. I’m thrilled to join a company that is so focused on helping people thrive each day, while collecting data essential to this emerging field,” Hall said.

A research scientist by training, Hall has spent nearly two decades at the intersection of science and policy. She started her career studying toxicology and molecular epidemiology at Columbia University. After serving as Program Director in the Public Health Group of External Medical Affairs at Pfizer, Hall joined the FDA’s Office of Planning and Informatics (OPI) in 2008 as a Principal Analyst. In this role, she initiated and led the development of CDER’s data standards plan. She was appointed Director of Regulatory Science in 2011.

Hall holds bachelor of science degrees in chemistry and in society, technology, and policy from Worcester Polytechnic Institute. She also holds a master’s degree in public health from Columbia University’s Mailman School of Public Health as well as a master of science degree in biochemistry and a PhD in toxicology from Columbia University’s Graduate School of Arts and Sciences.

About PatientsLikeMe

PatientsLikeMe 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 #dataforgood: 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 400,000 members, PatientsLikeMe is a trusted source for real-world disease information and a clinically robust resource that has published more than 70 research studies. Visit us at www.patientslikeme.com or follow us via our blog, Twitter or Facebook.

Contact
Katherine Bragg
PatientsLikeMe
kbragg@patientslikeme.com
+1.617.548.1375


Patients as Partners: How Phyllis is bringing the patient perspective to future doctors

Posted July 7th, 2016 by

Team of Advisors member Phyllis is living with Cutaneous T-Cell Lymphoma (CTCL) as well as Hodgkin’s lymphoma. In the latest edition of of our Partnership Principles series, she tells us how she works with med school students at the University of Pennsylvania in a patient shadowing program. The goal is to help the next generation of doctors better understand the patient perspective.

Below, Phyllis shares how the program gives students insight into “what it’s like to live with a serious chronic illness…personally, professionally, spiritually, financially, emotionally” — and opens up about what she’s learned about herself along the way.

You’ve been partnering with medical students through the LEAPP program for a number of years now. Can you tell us a little about this program and how you got involved?

LEAPP stands for Longitudinal Experience to Appreciate Patient Perspectives, and it’s a program based out of Penn Medical School that aims to teach first year medical students about what it’s like to live with a chronic illness. It’s a required part of the Penn medical education program. Medical students are paired up with a patient living with a chronic illness and they shadow them for 18 months. There are 120 future doctors in the first year class.

I was selected because I had been diagnosed with lymphoma, and about five years into my diagnosis, my physician joined the LEAPP initiative. He thought I might be a good mentor for this program. I was familiar enough with my disease and open enough to want to discuss it with these students.

The students contact me at least monthly by telephone or in person. They come to my doctor’s visits at least once every six months, they visit me in my home and get a sense for my neighborhood and they also visit if I’m hospitalized. It’s a required course and it’s a graded course, so it’s not something they can take lightly. I’ve done the program three times now and I’ve touched at least six future doctors. And this year, I was asked to be part of a round table discussion with another Penn patient and with many more of students. The presentations by me and the other patient were different, but stressed the same patient-oriented message.

What it has been like for you to teach these medical students through your own personal experiences?

It has been a wonderful learning experience. It makes me think about my illness in academic terms, because I have to explain to them what’s physically happening to me and what this lymphoma does, but it also makes me think about my illness in the greater world in a spiritual and much more sensitive way than I probably would have otherwise.

The students have to write about their visits with me and they’re graded by my physician. A part of the process is that they offer three questions and I get to choose one to answer for them. These really make the patient think about their experience beyond just the physical. The questions are:

  1. Did your parents and grandparents give you tools to deal with your serious chronic illness?
  2. Have you ever used alternative medicine or other non-traditional means of delivering healthcare?
  3. Are you a spiritual person? Has that helped you or do you not feel that’s been part of your managing of your illness?

I ultimately picked the spirituality question. I think my spirituality has been strengthened by being ill and it has made me appreciate every single day. Whatever will be will be and whatever future I have, I’m going to make the most of. It has been this program that has made me think this way because I have to answer these medical students’ questions. It makes me ask, “What is it that I want a doctor to know about me?” Sometimes you just think of relating your symptoms but maybe your physician should also know you have an autistic grandchild or a husband who lost his job or a sister dying of breast cancer. Those kinds of things impact the way a patient feels and how they face their medical care, affording medications, and living day to day.

What value do you think there is for the medical students to participate in this kind of program?

I can’t think of anything more valuable than this program for medical students. Sure, they learn about the body and the anatomy, but what they don’t learn — and what they can’t learn from anyone but the patient — is what that patient needs above and beyond the strict medical and record-keeping. Blood tests and MRIs and CTs and spinal taps — I’ve had them all. And yes, they tell my doctor a lot about what’s going on with me physically but unless he asks more personal questions or unless I reveal more about my life, he’s not going to know everything else that’s going on with me.

I think a lot of people do not reveal like that unless the doctor takes the initiative. This program makes me reveal what it’s like to live with a serious chronic illness…personally, professionally, spiritually, financially, emotionally. The relationships you have with the people and the world around you is so affected by having a chronic illness, and that’s something that doesn’t show on tests. That’s why this program is so good.

When you participate in this kind of a training program, you have to come to some kind of understanding of yourself to share with these students. If you haven’t been open it makes you more open, and if you have been open it makes you more organized about how to talk about life with a chronic illness — whether it’s a physical or mental condition.

That’s the value of this program for the students as well as the patient. These kids share what I tell them with the other students in their program. So the diversity of patients, not just of illness but of situations, sensitizes these future doctors. As part of the program they come to my house and they get to see my neighborhood. I live in a suburb, I have good food stores around me, I have a choice of pharmacies. When they came to this visit, they asked me to drive them to the closest hospital if I had an emergency and the closest pharmacy to get my medications. That was a part of my profile. Some of the other patients in the program are living in the inner city, they may be on Medicaid, and they may have five flights of stairs to walk up. So each of these medical students gets to hear about a variety of situations and they get a different sensitivity to the whole patient experience.

Have any of the partnership principles helped you in your work with your physicians or these medical students?

It’s a partnership in that I’m teaching them about what it’s like to be in the shoes of someone living with a chronic illness and they’re learning to value the patient perspective.

The goal of the program is for students to learn how a chronic illness affects a person’s life, health and family. We want them to treat their patients as people first. So it’s a partnership in that they ask questions and I answer them honestly. We listen and communicate openly. I relate to the idea that in a partnership you need to have clear expectations. They aren’t giving me medical advice, they’re not my doctors. They are shadowing me and I’m teaching them about my experiences.

What advice do you have for other patients who may be interested in finding this kind of partnership opportunity with healthcare providers?

I really think this could be a wonderful addition, and an easy and not expensive one, for the medical community to embrace. Teaching hospitals are a great place to advocate for this, large medical schools where there’s an affiliated hospital nearby.

Talk to your doctor, ask if medical students do training there. If patients would just talk to their doctors about the need for the next generation of physicians to really have a personal knowledge of their patients, more than just their medical records, it could be a huge step forward.

Even if you don’t have a program like this, put yourself in the position of thinking about how to approach teaching someone about life with your condition. If we as patients can start thinking of ourselves as teachers, not only about the medical part of our illness but the human part, that will do so much for physicians trying to understand the patient perspective.

Maybe then, we’ll see how a physician can change the attitude of a person by truly listening to them. Not just, “Hey, you should take this pill,” but listening to their whole experience and saying, “Why don’t you try to take a walk and take time to smell the flowers?” or “Check in with me tomorrow and tell me how your grandson’s birthday party went?”

That really stresses the humanity medicine can deliver. I think that’s the kind of patient-oriented care we seek.  While this approach may not be medicine per se, it certainly is part of healing. I applaud the physicians who subscribe to the LEAPP philosophy, the students who will practice it and the patients who advocate for themselves and others.  PatientsLikeMe has been in the forefront of patient-centered healthcare—thank you for your vision.

 

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Patients as Partners: Cyrena on connecting through social media

Posted June 29th, 2016 by

Earlier this month, Team of Advisors member Cyrena shared how she relies on many of the Partnership Principles in her interactions with her physicians. Today, she offers some insight into a different type of relationship in our health journeys — the ones we have on social media.

In addition to PatientsLikeMe, Cyrena is active on Twitter and Facebook and has used both to connect with other patients who what it’s like to live with bipolar II and lupus. Whether you’re social media-savvy or not, check out how she stays in touch with her virtual community to “exchange advice or just plain empathy” and get involved in patient advocacy.

 

“It’s all about networking”

Many patients live with multiple conditions, but the current nature of illness and treatment forces us to think of our conditions individually. In reality, these conditions interact and influence each other in ways that clinicians may not understand or recognize. Many of these patients end up online and looking for support.

I primarily interact with the chronic illness community on Twitter, but to a lesser extent on Facebook as well. I was an intermittent follower, but I became highly active during my hospitalization for my spinal cord injury in 2014. I didn’t really know any other chronically ill people with either of my conditions, but when I dove into Twitter, I found people with each, both, and so many more. It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.

The number one form of support that I obtain from interacting with patients online is validation. In physician appointments it is challenging to fit everything that I would like to convey or discuss in 15 to 30 minutes. But when I go online, someone is going through the same thing I am and we can exchange advice or just plain empathy. There is also an extensive patient advocacy community which I have become part of, which gives me the opportunity to not just voice my opinions on how patients are treated in the modern medical system, but also brainstorm with others on how to affect change.

“It was exciting to find this virtual community that provided the peer emotional support that I lacked in real life.”

 

First and foremost, I would recommend that patients interested in partnering with communities in social media recognize that there may be a sizable upfront investment. Twitter is akin to hovering above a massive highway and trying to identify which drivers you want to talk to. You can start by finding the Twitter name of one of the major organizations for your illness(es). Who do they follow? Follow some of those people. Who do they talk to? Follow those people. Start engaging people by sending messages pertaining to a topic of active discussion. Eventually those people start to follow you and your network grows.

Twitter moves very fast, but there are ways to stay engaged and live a normal life. I have a Twitter app on my phone that I check when I’m waiting in line or at the bus stop, and I keep a Twitter tab open in my browser when I’m working so I can pop in and out whenever I need a break from working. I have found the investment to be worth it because I like the rapid turnover of conversation and the opportunity to have a pseudonymous account. Others may prefer using Facebook for forming social media connections. There are thousands of patient groups there. Again, just start by searching for your illness and move from there.

It can seem scary and time consuming, but I’m an introvert and a graduate student. I just needed to find other people out there like me in some way. To quote a phrase I’ve heard endlessly over the past few months, “It’s all about networking!”

 

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Treating PTS: What members said in a recent study

Posted June 27th, 2016 by

June is National PTSD Awareness Month, so we’re shedding some light on what it’s really like to live with post-traumatic stress (PTS). At the end of last year, we teamed up with our partners at One Mind to better understand what it’s like for PTS patients to treat their condition. Nearly 700 members of PatientsLikeMe’s PTS community took a survey, and now that we’ve analyzed the results, we wanted to share what we’ve discovered.

Check out this infographic to see what members said about why they did or didn’t seek treatment, who helped them find it, and whether or not it helped.

 

 

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Patients as Partners: Member Laura on launching a PF support group

Posted June 24th, 2016 by

Laura (standing on left) at the June meeting of the New Britain PF Support Group

Over the past few months, the Team of Advisors has been sharing how they use the Partnership Principles in their personal health journeys. Laura, who’s living with IPF, recently sat down with us to talk about the New Britain PF Support Group she launched in Connecticut, and how important it is to have a community of people who know what you’re going through. Check out the Q&A below to see how she helps patients, caregivers, and their families understand that they’re not alone.

Tell us a little about the New Britain PF Support Group — who’s involved and what’s the goal?

The New Britain PF Support Group had the first meeting September 2015. The meeting is for the patient and caregiver, plus family and friends who may be interested in understanding what their loved one is going through.

The goal is to provide information on PF/IPF. Knowledge can empower the patient and caregiver to work with their doctors and professional team. Most importantly, the support group lets people know they are not alone — we are all in this together and we understand.

How did you come up with the idea of creating the group?

There was only one support group in Connecticut and it was quarterly in New Haven, about an hour away from me. I would go and get such wonderful information and talk to some really awesome people, both professionals and patients. Most of the patients were from the southern part of CT, and I felt that people in the northern part of the state would benefit from a face-to-face support group meeting. I knew from going to the meetings at Yale New Haven Hospital that I always left there feeling more empowered and emotionally stronger. I wanted other PF/IPF patients to feel the same.

Since September 2015, another group has been started further west. In attending those meetings I’ve met new patients. It’s exciting to see that we are touching more and more PF/IPF patients who didn’t have face-to-face support with others who shared the same issue.

What’s the most beneficial aspect of partnering with others who know what you’re going through?

We have quarterly meetings and while the first part is educational (information about what is going on in treatments for IPF/PF), the majority of the meeting is support. If you sat in the corner and watched, you’d notice that the patients and caregivers are like sponges. They want to get information from others who’ve “been there” and they want to give others their knowledge.

At the second meeting my daughter said “Mom, they just want to talk,” and she’s so right. Meetings are supposed to be two hours, but not one has ended on time because no one wants to leave. That speaks volumes.

At our first meeting we had 23 people, and each meeting averages about that many. We have new patients who look totally devastated when they walk in and relieved when they leave. It humbles me to see how everyone touches a life in there.

How is this type of peer partnering different from your other health-related relationships?

For me, this disease has become a full-time job. I’m in a clinical trial, I am in a transplant program at one hospital and being evaluated at another at the moment. That’s in addition to going to the gym to stay strong or to pulmonary rehab maintenance. I have to make sure that all my tests are updated so life becomes one big doctor’s appointment. The doctors, coordinators, nurses, technicians, etc. are all very nice and helpful, but there is nothing like being able to vent your frustration or talk about the excitement of “passing” a test to another patient. Someone who knows exactly what you are going through. It’s priceless, really.

What have been some of the challenges of starting a support group?

I’ve been lucky, the only challenge I’ve had is getting the facility to let us start a meeting. Once that was cleared it’s been a breeze. The Hospital for Special Care has been so very good to me. The Pulmonary staff is so caring and awesome to deal with. I became a Support Group Leader with the Pulmonary Fibrosis Foundation (PFF). They provide grants to start a group and educational booklets. Most importantly they provide support to the support group leaders. I’m told by other leaders that it’s a challenge getting presenters. I’m sure I will have that issue eventually but being a new group that hasn’t happened yet.

What do you enjoy most about it?

I truly enjoy seeing the patients and caregivers. The more patients and caregivers we have, the more family and friends we can educate. The more I get out of my own head and help others, the more emotionally strong and empowered I feel. Every time I see the number of people and new people who show up or even contact me I get emotional. Makes me realize how not alone I am.

Do you have any advice for others looking to start similar groups? 

Yes: Find a place, contact Pulmonary Fibrosis Foundation, and do it. There is definitely a need.

 

 

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Food for thought: Which foods trigger headaches and migraines?

Posted June 23rd, 2016 by

Last week, we shared some study results for National Migraine and Headache Awareness Month. Today, we’re digging deeper into which foods might trigger – or help – chronic headaches. We asked the community for their diet dos and don’ts, and here’s what members have said so far…

 

“I have found too much sugar can trigger a migraine. But then at the same time, in the past when I have had a migraine, If I drank a Mountain Dew (regular) and ate salty potato chips it would help alleviate it.  I believe it was the salt and caffeine that helped.” 

— PatientsLikeMe member living with chronic kidney disease

 

“I have noticed an incredible difference dropping sugar from my diet along with dairy. Am now using Stevia and there are many alternatives to milk products.”

 —PatientsLikeMe member living with rheumatoid arthritis

 

“I have suffered migraines for more than 35 years… At one point, I was having migraines that were non-stop for three to five months at a time. One of my biggest triggers was fish. The only fish that I can eat anymore is salmon and tuna. I can eat shrimp in small amounts but absolutely nothing else.”

— PatientsLikeMe member living with fibromyalgia

 

Which foods set off your headaches or migraines? Head over to the forum and share your experiences with the community.

 

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Migraine & Headache Awareness Month: New insights from a recent study

Posted June 16th, 2016 by

It’s National Migraine and Headache Awareness Month, so let’s help spread that awareness by sharing the results of a recent survey that 300 members from the migraine community on PatientsLikeMe took.

For this study, we defined chronic migraine as having had 15 or more headaches in the past month. Here’s what members helped uncover:

High level takeaways:

Some of these high level results might seem obvious, but we first wanted to set a baseline for what the community was experiencing.

  • The more they experience migraines, the more types of symptoms they report and the worse those symptoms are.
  • Also the more they experience migraines, the worse their overall quality of life becomes for things like their ability to be active and their emotional experiences.  
  • Those who experience chronic migraines more often report also living with anxiety disorders.

Symptoms takeaways:

Not surprisingly, you’d expect that if a person is living with migraines, some of the symptoms they’d report would be headaches, nausea and light sensitivity. But what they also shared is that their experiences go beyond these typical symptoms to include:

  • Pain: back pain, muscle and joint pain, muscle spasms
  • Mental: brain fog, problems concentrating, dizziness
  • Fatigue: sleepiness, insomnia, fatigue, exhaustion

Treatment takeaways:

We also wanted to learn more about the treatment types this community is taking to treat migraines and how burdensome they are. Here’s what they shared:

  • Nonsteroidal anti-inflammatory drugs (NSAIDS) (e.g. Ibuprofen, Naproxen) and Antimigraine (e.g. sumatriptan, zolmitriptan) are the most reported types of treatments.
  • Most patients report taking their treatment as prescribed with few issues.

 

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Patients as Partners: Allison shares her insight on teaming up with organizations

Posted June 15th, 2016 by

Allison (center) receiving the 2015 “In Our Own Voice” Presenter of the Year award from the Dallas Police Department

This year’s Team of Advisors has been sharing how they use the Partnership Principles in their health journeys. Today, we hear from Allison, who’s living with bipolar II. Allison is a volunteer with the National Alliance on Mental Illness (NAMI) in Dallas and also runs support groups for the Depression Bipolar Support Alliance (DBSA). See what she has to say about the two principles that she relies on most in her relationships with these organizations, and what she’s learned along the way: “I realized I could use MY voice to help others.”

Can you tell us a little about the different organizations you’ve partnered with?

I have been working as a volunteer with NAMI Dallas. NAMI is the National Alliance on Mental Illness. I was on the NAMI Dallas board of directors. NAMI has affiliates in every state. They have programs for family members and for people living with a mental illness. I am a volunteer scenario trainer for Dallas Police Department. The scenario training is part of a 40-hour class that the officers take, focused on Crisis Intervention Training. I am certified to run support groups for DBSA (Depression Bipolar Support Alliance).

How did you initially get involved?

After being diagnosed with bipolar, I wanted to find other people who were living with similar conditions. I started attending support groups and taking classes at my local NAMI and DBSA organizations as a way to find support and learn about my mental illness. After attending many NAMI meetings I was asked if I would go to training to become a support group leader. Shortly after starting new support groups I was sent to St. Louis for training to become a teacher for their program Peer to Peer.

I also took a class that NAMI offers called, “In Our Own Voice.” This class helped me put my life story together so that I can organize my thoughts to share my story with others. After a few years of teaching and leading groups I was asked to tell my story to a group of firemen. The firemen and women were new recruits and I was there to give them some insight about mental illness and ways to be helpful when faced with mental illness calls. That talk was the beginning of something new for me. I realized I could use MY voice to help others.

I have been volunteering with the Dallas Police Department each month by doing scenario training. We create scenarios the law enforcement officers encounter on a regular basis. Our goal is to teach them new ways to work with people who show signs of mental illness. At the end of the week I share my life story with class of officers. It is an amazing experience when I have the chance to work with them and then share my story because they have no idea, all week, that I am a person who lives with mental illness. I was awarded the 2015 In Our Own Voice presenter for the Dallas Police Department, and that was a very memorable moment for me.

What are the dos and don’ts you’ve learned about how to effectively share your story so people will listen?

I have learned to share my story only when people are interested, if I am asked, or if I feel I will be helping someone by sharing my experiences. The most helpful thing I did to get me started telling my story was to take the “In Our Own Voice” class through NAMI because it helped me learn how to organize my thoughts. As time has progressed I have learned how to tailor my story for the specific audience I am speaking to.

Allison volunteering as a scenario trainer for the Dallas Police Department

Have any of the Partnership Principles you developed with the Team of Advisors helped you in your work with organizations like NAMI or the police department?

I would say “Respect each Partner” is something that resonates with me as I think of my journey. I have learned when I need to say no to a speaking engagement if I am feeling overwhelmed. I feel very fortunate that the wonderful people at the police department understand and respect me enough to not push me to over extend myself. They are actually better about making sure I am not overextending myself than I am.

“Reflect, evaluate and re-prioritize” is another partnership principle I live by. I have learned it is okay to move on when a relationship is no longer working for the good of both parties. I remember how difficult it was to step down from my position on the NAMI Dallas board of directors. I had been serving for over two years and felt that I wanted to put my energy into my training. I realized in order to stay healthy, I cannot overextend myself, and that meant giving up something if I wanted to take on a new role.

What advice do you have for other patients who want to learn more about partnering with organizations?

Be creative! I NEVER imagined what attending support groups was going to do for me. I would never have met some of my closest friends or had the opportunities to work with some of the best organizations if I didn’t go to that first meeting. Each time I tell my story, it helps me work on my recovery to a healthy life. I encourage everyone to try something new and see where it takes you. You will probably be surprised.

 

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PatientsLikeMe Co-founder Ben Heywood reflects on a recent visit from Dr. Jill Biden

Posted June 10th, 2016 by

Last month, PatientsLikeMe was honored to host a special visitor — Dr. Jill Biden was in town as part of the Cancer Moonshot Initiative announced by President Obama in his 2016 State of the Union Address. She made time to stop by our office to learn more about how PatientsLikeMe works and how members use the site to manage their health and improve outcomes.

During her visit, Dr. Biden was greeted by Co-founder Ben Heywood, who introduced her to some of the folks behind the scenes here at PatientsLikeMe. Ben sat in on a roundtable discussion with Dr. Biden and four patients from our community — Phyllis, Jackie, John, and Laura.

Here’s what he had to say about what the experience meant to him and PatientsLikeMe…

Ben Heywood and his mother, Peggy Heywood (left), pose with Dr. Jill Biden during her visit to PatientsLikeMe.

PatientsLikeMe was founded on a simple idea: when patients connect to share their experiences, they can learn from each other how to better manage and treat their disease, and improve their outcomes. We’ve been honing the way we help our members do this for over a decade now, but Dr. Biden’s visit last month was external validation of this simple idea inspired by my brother Stephen’s ALS — and the not-so-simple work that our members and our team are doing now on a much broader scale. It’s important that policymakers understand the challenges of those with chronic illnesses and what it’s like for them to live within today’s medical system.

I think what resonated most with Dr. Biden was hearing our members’ stories. We invest so much money in healthcare and have made incredible strides in technology and advancing treatments. Yet traditional clinical care only accounts for a certain percentage of outcomes. It doesn’t encompass the rest of a patient’s life and environment — access to good nutrition, financial stress, daily life — which are likely to have as significant an impact on one’s illness.

It’s important to understand the full narrative of the patient experience in order to begin to think about that problem more holistically. As Dr. Biden looks at big data and other things, I hope it will bring new focus to the importance of understanding this narrative and putting it into a data framework.

From a policy standpoint, there are clearly things that need to be advanced. The Affordable Care Act took away pre-existing conditions for health insurance. That needs to be considered in other areas like life insurance, long-term care, and other areas. I believe we should be talking more about laws around preventing data discrimination and protecting personal medical information, much like in GINA (the Genetic Information Nondiscrimination Act). I hope Dr. Biden will continue to advocate and fight for patient-centricity. This means investing in and doing all the work necessary to meet patients where they are, give them access to meaningful data, and allow the most active and engaged patients to show what’s possible with their own information.

Dr. Biden’s visit was also significant on a personal level. I lost my brother, Stephen, and Dr. Biden and my mother lost a son. That’s a strong shared connection. What I think Stephen did for our family was give us the moral authority to amplify the voice of patients. While it’s amazing what medicine can do today, we can still do better.

I believe the Bidens experienced something similar to the calling we felt — the realization that that fundamentally, the healthcare system should be about patients, for patients, and designed to help patients get the most benefit. And the starting point is effectively measuring what patients value most in their care.

 I’m very proud of our team and how we’ve worked together with our patient community to demonstrate what’s possible in healthcare. For me personally, it’s really powerful and exciting to have the spotlight shown on that and to really highlight this part of our work.

Roundtable discussion with Dr. Biden

 

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Precision medicine: The role of genetic testing in diagnosis and treatment

Posted June 8th, 2016 by

We’re opening up a dialogue about precision medicine and pharmacogenomics with the support of our partners at Assurex Health what they are, how they might benefit patients like you, why medications may work for some and not for others – and many of you have been sharing your thoughts with the community. To keep this conversation going, today we’re talking about the role of diagnostics in genetic testing.

First of all, what are diagnostics? Chances are, you’ve probably already had a diagnostic test, but just didn’t know it. A diagnostic test is any kind of test done to help diagnose a disease or aid in treatment decisions. If you’ve ever had a blood test, strep test, etc., then you’ve had a diagnostic test. Diagnostic testing will play a central role in precision medicine. We sat down for a chat with Dr. Bryan Dechairo, Senior Vice President, Medical Affairs & Clinical Development at Assurex Health to learn more about this.

Can you tell us more about the role of diagnostics in precision medicine?

Diagnostics are key in precision medicine because they may provide a way to identify unique patient characteristics, which may influence how patients will respond to medications. Within the population, you have patients who respond well and patients who respond poorly to a given medication. To help providers make a decision about medications, diagnostic tests can be based on biological markers (for instance, when we look at things like glucose levels) as well as the DNA code that you’re born with. But characteristics like age, gender, previous medications that have failed, etc., are also diagnostics – any of these become the pieces of information that help add precision to which types of patients will respond to medications.

Specifically, how can genetic tests help patients with depression and other psychiatric conditions?

For starters, we’re getting closer every day to being able to use genetics to help identify which type of depression a patient is more likely to have. More accurate diagnosis, which is very hard in psychiatrics, help the provider to decide which type of medication will work best for treatment. Certain genetic tests may help the provider understand how an individual processes medication. Genetic information may be a piece of information that can help providers and patients understand which medications may be more or less appropriate for the individual.

What kinds of new developments have you seen in recent years?

I’ve been working in this field for over 20 years and I started when the ability to analyze genetics had just come about. It was very complicated with very few successes. Fast forward into the last decade and a half and we understand how medication works in the brain, the neuropharmacology in the brain, and the genetic pathways. In 2007, people were looking at markers individually, but medication is far more complex than individual markers. When you look at a single genetic change in a gene, it doesn’t necessarily add up to how well a medication could work because it’s just a small percentage of the overall picture. Initially, it didn’t show beneficial outcomes to patients. However, with combinatorial pharmacogenomics, we can now combine multiple genetic markers and weigh the contribution of each marker to specific medications. We can weigh and consider changes specific to each patient to help support an individual decision across multiple markers to determine the best treatments.

Combinatorial pharmacogenomics has the potential to help get patients off a downward spiral by getting them to the right medication faster. In trial and error prescribing as many as 50 percent of prescribed medications fail the first time and 71 percent of medications fail the second time. This can leave patients feeling like nothing can help them. For some patients without proper treatment, depression can continue to get deeper and that cycle needs to be broken sooner than later.

What function do you see precision medicine and pharmacogenomics having in the industry in the next few years and going forward? How do you think this field will continue to evolve?

Today precision medicine has a place in the market. For instance, in the area of treatment selection for depression there are already over 300,000 patients genetically tested in the U.S. While this is a field that’s certainly still growing and developing, with several questions still on the table and tools we use evolving – there are still patients now who are seeing benefits from it. Genetics is just one component, but it’s one of the most important. We can also start tapping into electronic health records and mobile apps or ask patients about environmental exposures that can influence health. As we gather more data from first diagnosis and then throughout life with chronic illnesses, all of a patient’s data will come together to enable better predictions for treatment outcomes leading to improved response rates. Genetic data can also improve drug development by helping identify new disease targets, as the goal is always a 100% response rate.

What advice would you give to a patient who is interested in taking a genetic test, but isn’t clear about the potential benefits or how they should go about initiating the process?

Always talk to your healthcare provider first and ask what tests are available. If your doctor is unaware of genetic testing options then you should be able to call a customer support hotline of companies that are offering the test.

 

Please Note:  This post is part of a series of educational content supported by Assurex Health in partnership with Patients Like Me.

 

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Patients as Partners: Cyrena talks empathy and assertiveness

Posted June 6th, 2016 by

We’ve been talking to 2015-2016 Team of Advisors about the Partnership Principles they put together and how they use them in their personal health journeys. Next up is Cyrena, who’s living with bipolar II and lupus and recently completed her PhD in pharmacology. Below, she talks about managing multiple conditions, getting on the same page as her doctors, and the need to be both empathetic and assertive in your relationships with your care teams. Plus, stay tuned for more from Cyrena soon!

 What I’ve learned: Know your needs, make shared decisions

As a graduate student in pharmacology with an interest in mental illness and immunology, I usually find myself in a unique position in the “hot seat.” I don’t view my physicians as all-knowing entities. I am not a physician, but I have a knowledge base, both about disease processes and my own body. What I bring to the table is just as important as what they bring, and therefore I view my interactions as a partnership on mostly equal footing. (After all, I don’t have prescribing privileges!)

Studies at the PhD level require a level of stamina and mental acuity that aren’t always present in patients with lupus and bipolar disorder. When I am with my physicians, I have to express that my needs are likely different than the typical patient. I can’t have medications that dull my thinking or alertness. I have to keep things moving along, so even if I have a flare I may be able to slow down but I can’t completely stop and rest. Once we are on the same page regarding my needs and expectations, we are in a position to make shared decisions that work best for my health and my studies.

Having both a mental and immune illness has been an eye-opening experience. Because psychiatry and mental health is essentially isolated from other areas of medicine, I have had to be the foreman in the factory, making sure that all the parts go together and everything works as it should. I have been diagnosed with bipolar disorder longer than lupus, but in almost every encounter outside the psychiatric setting, it is basically an afterthought. I have to assert its importance in my health and wellbeing and try to bridge the silos. Part of my research involved the effects of the immune system on mental health, so I am intimately aware of the relationship between the two in my case as well as in the scientific literature. Fortunately, I have a psychiatrist who is well versed in the relationship between mental illness and physical chronic illness, so I am not completely alone in my struggle.

“Clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.”

 

For those who shoulder multiple illnesses and significant career expectations, it is critical for the patient-clinician partnership be clear on how treatment will impact those expectations, and that what is “most important” can change at any point. At the same time, recognition of the new or ongoing limitations of illness and perhaps being willing to reevaluate the history of illness and treatment plan, even if it may result in career setbacks.

Partnering four ways: Advice from one patient to another

First and foremost, know who you are and what you want. The clinical environment can be intimidating, and when you’re sitting in the patient’s seat, your mind can completely blank out and you find yourself going along with whatever they tell you to do.

Secondly, know who they are and what they want. Clinicians have goals as well, and if you are managing multiple conditions, those goals may be in conflict with one another. Be prepared to advocate for yourself in the event of pushback, but also acknowledge and appreciate when their goals align with yours.

Third, stick up for yourself. If you don’t like something, whether it’s a treatment plan or the clinician themselves, be willing to say “no.” I have no problem walking away from a clinical environment that does not suit my needs or will not work with me. I recognize that others may be limited in their choices by geography or insurance plans, but voting with your feet can send a message that comments or complaints may not.

Fourth, recognize the limitations of your clinicians and the medical system. Your appointments aren’t 15 minutes because that’s what the physician wants. They hate it too! There are forces outside the patient-physician relationship that are invisible to the patient but omnipresent in the office visit. My mother is a nurse, my research advisor was an MD, and I spent a little time in medical school. I am aware of the pressures on the other side and try to give most clinicians the benefit of the doubt. A little empathy goes a long way. It may not seem like it, but clinical folks are people, too. I am an empathetic and assertive patient, and I am sure that has eased my relationships with clinicians throughout my illness experience.

 

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