5 posts from July, 2016

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.

Share this post on Twitter and help spread the word.


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.

 

Share this post on Twitter and help spread the word.


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!

 

Share this post on Twitter and help spread the word.


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.

 

Share this post on Twitter and help spread the word.