13 posts tagged “partnership principles”

Redefining Patient Partnerships: Looking back on the 2015-2016 Team of Advisors

Posted September 15th, 2016 by

It’s been quite a year for the 20152016 Team of Advisors. This year’s team was tasked with bringing the patient voice to a central issue in healthcare: how to redefine patient partnerships.

Over the past several months, they’ve worked together to rethink what it means for patients to be partners and establish new ways for the healthcare industry to deliver better care.

The team introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — from medical students to clinical trial coordinators. And through personal essays and interviews, each shared real-world examples of how they use these principles in their own lives.

As their term comes to an end, we wanted to share a recap of everything they’ve done. Hover over the image below and click on each member to check out what patient partnership means to them:

 

 

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Patients as Partners: Christel on “finding your tribe”

Posted August 4th, 2016 by

Today, we’re sharing the final piece of the Patients as Partners series from Christel, who’s living with type 1 diabetes. Christel has relied on several of the Partnership Principles including respect, communication, and shared responsibility throughout her journey. Below, see what she says about connecting with others who know what she’s going through and discovering the “life-changing benefits of partnering with peers.”

Whether you are newly diagnosed or a veteran in your health condition, there are always opportunities to learn, share, and create a group of trusted peers who become your tribe. Despite a diagnosis of type 1 diabetes over 30 years ago, it wasn’t until I recently “found” my tribe that I truly understood the life-changing positive benefits of partnering with peers — those who travel along a similar healthcare journey. How did I find my tribe? I created it, using many of the Partnership Principles.

Know Your Needs

In a quest to better understand diabetes and how to manage it, I attended conferences and meetings where experts would stand up and discuss research and treatment plans. These sessions were helpful, but what shocked me was where I truly learned to understand daily life with my disease: my peers, during rapid-fire discussions in hallways or sitting around a lunch table. We began to talk beyond the medical management and focused on how to “live” with diabetes.

I realized that there was something missing that was needed in our community: a patient-led psychosocial idea exchange where we could share our fears, frustrations, and tips in a safe, protective environment where no one felt judged or criticized. The Diabetes UnConference was born.

Share Responsibility

I couldn’t do this alone. I asked for help from a group of people impacted by diabetes who I trusted: my peers. Those whose wisdom I sought out and those I admired for their ability to be honest and supportive became the facilitators for sessions discussing intimacy issues and burnout. They helped others share their secrets by creating a sacred space where social media was not allowed to penetrate. Our peers are our experts and by acting as partners, we have the opportunity to switch roles during discussion.

Christel and peers at the Diabetes UnConference

 

Respect Each Partner

Part of our commitment to each other during the conference is to check in frequently with these questions: “Do you feel welcomed? Do you feel valued? Do you feel respected?” Many of the conversations that occur during sessions are deeply personal and even if we have different attitudes or treatment plans, the overarching goal is to learn from each other. We have had attendees diagnosed in the past six months sitting next to peers diagnosed over 50 years ago — and each said they had learned something new and were able to find a connection, because they vowed to respect their individual experiences.

Listen and Communicate

I value the communication between my peers during The Diabetes UnConference, because in listening to others and being able to openly share my experiences, I have learned new ways to manage daily life with diabetes. While I may not utilize a particular treatment, learning about it from my peers is crucial, because I never know who I might meet in the future who is interested in that particular issue. Connecting and communicating with others widens my partnership with my peers through listening. Many of our attendees say that because of what they learned at The Diabetes UnConference, they have made positive changes to their daily management and have achieved measurable positive outcomes. I’m one of those peers.

Evolve and Accept Growth

In addition, by listening to the feedback my peers gave me from the first conference, we have evolved. One attendee said that they wished those who love us — spouses, significant others, parents, children — were able to have the same type of psychosocial support and safe, non-judgmental environment. Many other peers agreed, and the next year, we created that space for a new group of peers: PLUs (People who Love Us). Partnering with my peers allowed us to grow and welcome more partnerships that didn’t exist before.

Reflect, Evaluate, and Reprioritize

As The Diabetes UnConference matures, I have found my tribe and helped to grow partnerships that have turned peers into trusted confidants and friends. Many attendees check in with each other on a regular basis, despite living across the country. My peers and I are looking to expand ways to have those trusted face-to-face conversations in a safe environment to others who can’t attend a conference due to location or financial constraints. We are looking for what’s missing and finding ways to fill that gap.

My experience with founding The Diabetes UnConference has me wondering how many other health conditions could benefit from this type of psychosocial idea exchange and how others could partner with their peers. Using these Partnership Principles offered up by the PatientsLikeMe Team of Advisors is a great place to begin.

 

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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.

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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.

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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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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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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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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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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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Patients as Partners: John and David share their clinical trial experiences

Posted June 1st, 2016 by

We’ve been hearing from members of the Team of Advisors about how they’ve used the Partnership Principles in their health journeys. Recently, we sat down with John (Dockstoy), living with ALS, and David (Davidgewirtz), who’s living with lung cancer. John and David are both interested in research and have been involved in a few clinical trials. Below, they share their firsthand trial experiences, offer up some advice for others, and talk about the importance of collaboration and mutual respect with their care teams along the way.

Can you tell us a little about the clinical trials you’ve participated in?

John: I took part in trials at:

  1. Massachusetts General Hospital (September 2014) – phase 2, randomized, double-blind placebo-controlled Multicenter Study of Autologous MSC-NTF Cells in Patients With ALS
  2. Bronx VA – Brain and nerve stimulation for hand muscles in spinal cord injury and ALS
  3. Weill Medical College of Cornell University – Safety of Capryclic Triglycerides in ALS: A Pilot Study

Team of Advisors member David, living with lung cancer

David: I was diagnosed with stage four metastatic lung cancer just about five years ago. June 2011. Since that time my only form of treatment has been targeted therapies which were available to me through clinical trials. The first clinical trial I received the drug Erlotinib known as Tarceva for three and a half years. The second clinical trial I am now on for about fifteen months targets a mutation that is responsible for resistance to Tarceva. The Clovis pharmaceutical company makes the drug with the code name C01686 which does not have FDA approval and Clovis recently disclosed that the drug has been withdrawn from future development. Both drugs have enabled me to live a very high quality of life and unless told nobody would know I had a terminal disease.

Clinical trials require the patient to be an active participant in the treatment modality. For me both clinical trials required that I have monthly visits to the clinic for blood work and scans every two months. The routine of my CT scans include my chest, abdomen, and pelvis plus a whole body bone scan. Normally I spend six hours at the hospital to compete these tests. That I am monitored very closely is a double edged sword. The downside is the frequency of scans exposes me to significant radiation which overtime is also associated with cancer. There is also generalized anxiety that comes with this routine. When you’re done with one cycle which includes a discussion with the oncologist about the radiology report, you automatically start to think about the next cycle. The silver lining in this cloud is that detection of new disease is caught very early and more often treatable than not – a really good benefit, which takes some of the sting out of the routine.

Have any of the partnership principles helped you get involved in these clinical trials?

John: I believe all principles apply. Respect is key; and alignment and teamwork from both parties involved.

David: “Know your needs” was the principal driver of why I entered a clinical trial. This principle requires that the expectations of the patient (me) are aligned in a partnership with the goals of the oncologist. In my situation there was a shared expectation of the value of clinical trial. In collaboration with my oncologist we discussed the likely benefits, side effects and the efficacy of the trial as a treatment plan for my advanced stage lung cancer. We shared the belief that the benefits of the trial far exceed the risks associated with taking Tarceva. We shared the value that (1) I would receive state-of-the-art treatment with the expectations that the drug Tarceva would (2) not not only control my cancer, but would extend my progression free survival of my disease.

How do you decide if a clinical trial is right for you?

Team of Advisors member John, living with ALS

John: Timing is a critical decision factor. What I mean by that is many clinical trials have two-year and three-year exclusion criteria. Also, location — most trials do not reimburse for travel or nominal reimbursement. You must believe that the trial will have a benefit, not only to you but for those to follow.  

David: In collaboration with caregivers the patient must know his/her needs in terms of the benefits and risks of entering a clinical trial. This requires that the care team fully explain the benefits of the trial versus the risk of participating. A phase one trial poses the most risk to the patient with an uncertain outcome. In contrast, a phase three trial poses the least. For example, my first clinical trial was a phase three trial where I was given the drug Tarceva with expectation that my medium progression free survival would be 12 months. In my case I did not progress until 3.5 years. Truly a great outcome despite some manageable side effects or risks.

A patient also has the opportunity to enhance the understanding of their disease. All types of clinical data captured in the study helps organizations like PatientsLikeMe market data to pharmaceutical and insurance companies who are stakeholders needed to fast-track new drugs from the bench to the clinic. In the end, your participation along with others may save or prolong the quality of your life. This possibility was the primary driver for me to enroll in another clinical trial that has kept my cancer in check, now five years, with minimal side effects.

What advice do you have for other patients who want to learn more about participating in clinical trials?

John: Research, research, research! Scour the Internet for details, speak with friends and family, ask your doctor what they think and what they see on the horizon for new trials. Be prepared to look at what’s next in clinical trials so as one completes you can start up another.

David: The decision to participate in clinical trials encompasses many of our PatientsLikeMe partnership principles. For example, where you are in your treatments phase may dictate what principles are more important than others. If you are at the start of your treatment, then you must have a very good understanding of what a clinical trial can do for you — how much more quality time the treatment offers. You can only arrive at this decision point if you and your care team have a shared understanding of the benefits of participating in a clinical trial versus pursuing a different line of treatment. Through my experience with clinical trials you are well served if you operate under the assumption that participation is a shared responsibility. Alternatively, if you reach a milestone in your treatment where you must go to another line of treatment then it is critical to reflect, evaluate and reprioritize if your current care team is the right team to meet your needs. Finally, regardless of the phase you enter a clinical trial, you must self-educate yourself

That means you have done some basic research by:

  1. Reading about relevant clinical trials on sites like the National Cancer Institute, which has a listing and description of all clinical trials in the U.S. and worldwide.
  1. Preparing yourself for entering a clinical trial by visiting the government website that explains what patients and caregivers should know about participating in clinical trials.
  1. Participating in organizations like PatientsLikeMe that have communities where patients share their treatment experiences, side effects and their success and failures. Personally, these organizations have empowered me through emotional support and knowledge of other clinical trials that may become options for me while I travel on my journey.

 

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Patients as Partners: Gus and Maria talk partnering with your caregiver

Posted May 11th, 2016 by

The 2015-2016 Team of Advisors recently introduced the Partnership Principles. They’ve been sharing personal stories about these principles in action to kick-off conversations on partnering with all sorts of people — medical students, clinical trial coordinators, and “normals.” Today, Team of Advisors member Gus along with his wife and caregiver, Maria, share about their special relationship and how they work together as a team.

How has it been managing your dual roles of husband/wife and now patient/caregiver? What is the biggest challenge in this?

Gus: I believe the hardest thing has been always feeling I was in control and didn’t need anyone’s help or assistance. But how the tables have turned, I lean on my wife more than ever before, with the understanding I try every day to be as independent as possible. I truly see how tired my wife gets and how frustrated this illness has made her feel. I respect her time and appreciate everything she does for me. I sometimes push her towards taking a time out and spending time for her. She needs time for herself and to unwind from all of this.

The listening part sometimes gets very difficult, because I see things and don’t communicate them correctly. It’s so difficult and so frustrating because I just want to get up and fix it. I feel like things are getting better, I try so hard to shut my mouth and then listen.

I sometimes feel bad because I want or need help but I don’t want to bother or ask for it. She will always ask me if I need help and I just say no. I feel bothered inside and hurt because she only wants to help me. But I’m working on it every day.

Maria: Gus and I have always worked together. He always tried to make life as comfortable as possible for us all these years. Other than my continuing to work full-time and having to make sure that he has all he needs, my biggest challenge is making sure Gus is getting the proper nutrition and is made as comfortable as possible so that I don’t have to worry too much about him while I’m at work.

What are some new things you’ve learned about each other throughout this?

Maria: Gus is probably impressed with how I’m slowly becoming more patient. Since he has always been the more patient and nurturing one, I am now somehow finding myself being more like him. And I continue to be amazed by his spirit. Even after such a devastating diagnosis as ALS, he was only down temporarily. Although he isn’t able to do very much physically, he continues to be the head and shoulders of our household. He keeps us going strong.

Can you describe the ways you partner? What works and what doesn’t?

Gus: Living on the same page of life, what does this mean? Having an understanding and knowing when to ask for help and doing the simplest things you can do.

Sharing responsibilities sometimes can be tricky. Our bodies may not function but our minds are just fine. Not making a mess and doing your best in every way possible. And no nagging, this is the worst thing possible. And don’t take her or him for granted because we need each other for support and good health. Counting your wins and telling yourself you got this. Sharing your positive thoughts and negative feelings when possible, not holding things inside. Sharing your wins and losses.

Communicating and openness in all ways will make things so much better. I tell my wife everything, good or bad I don’t have anyone else who understands me better than she does.

Maria: Currently I have just been going full speed ahead – on autopilot – dancing as fast as I can. There are a million things I could come up with but I haven’t yet figured out what works and what doesn’t – still trying. My only tip is to continue to stay as informed as possible regarding ALS research and things people have tried to live more comfortably with the disease. Also to help your partner have a better quality of life by trying to find things that will naturally relieve some of the discomfort brought on by ALS.

What’s the most important piece of advice you can give to other couples in your situation?

Gus: The first word that comes to mind is patience (and more patience). There are no right or wrong ways of doing things, it’s just how both of you react and what action or plans have been discussed. First comes the falling or not being able to use your hands or walking without use of a walker. It’s different for everyone, but the most important part of this process would be communicating and understanding each other’s feelings and how this illness will change everything. It’s hard, and very challenging for my wife, coming and going I can only imagine the feeling or heartache she endures. To have compassion and empathy really helps.

Maria: Stay optimistic – one never knows how ALS will progress. We have found that with the proper physical therapy and nutrition (Gus has chosen to go with massage therapy, acupuncture, and a gluten-free diet) he continues to get around using a walker. And if his swallowing or breathing starts to feel compromised, he lets his acupuncturist know and he’s good for a few days.

Final thoughts from Gus: Take every day step-by-step, don’t feel helpless or sadness, your attitude and thoughts create a better environment for both of you and your family. For me it’s called positive in and positive out, every word or action matters and your facial expression matters the most. You must become a good poker player, not showing what’s in your hand. Because when you show discomfort or anger your better half will feel like he or she is to blame. Yes, it’s tough and not easy, but what can you do, go with it and create the best situation possible.

It’s a fact we all struggle with something. No matter what the issues are, they’re important to us. Some of us may have financial debt issues, and others health concerns, and anything else you could think about. When you are ill, sometimes the solutions are a bit more challenging. And that’s where our partners and caregivers come in. The simplest things are now the hardest or a bit more challenging in completing our tasks. Some of us may not have partners or caregivers, so then what? How do we cope with the issues at hand, where do we go for help? Finding the answers to our questions sometimes may be difficult and strenuous. There are many sites and forums that can assist us like PatientsLikeMe, and other blogs sites associated with partners and caregivers.

Families may not have the resources available to them, finding the information provided will make a difference one patient at a time. Finding help and support is vital – every day someone requires assistance. I believe everyone deserves a helping hand when possible, no matter what. So when your loved one becomes ill and funds are low, they need a place and solutions to their questions and concerns. Sending them to a site may not be the answer, but speaking to them makes it better. Just having someone to listen and allowing them to vent their frustrations is so important. It’s our duty as civilized human beings. Giving back to those who can’t and providing the information is key.

 

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Patients as partners: Member Peggy on the diagnosis journey (Part 2)

Posted May 6th, 2016 by

Earlier this week, member Peggy (peggyznd) illustrated the 2015-2016 Team of Advisors’ Partnership Principles by sharing how to advocate for yourself and work with your doctor in your diagnosis journey. Here, she talks about finding a specialist, questioning your diagnosis and switching doctors. Peggy reminds all patients play an active role in their health: “Be like the parent who must protect and nurture the child, and do the same for yourself.”

Do I have to diagnose myself to get to the right specialist?

You might. Your family doctor may recommend a certain specialist. Not unusual, but if your problem is seen through too narrow a lens, you may not get the best diagnosis. Is the exhaustion you feel due to a failing heart, or is it due to an indolent blood cancer? Is the stomach cramping due to an ulcer or to a parasite which you brought home from a trip? You may start down a path of specialist to a subspecialist, moving away from a broader review to an increasingly narrow. If this does not make sense, or there is no clear resolution of the problem, this is a time to ask, “What else could it be?”

That may call for a return to the family doctor with all the various reports and tests in hand to review all of them. AND you have been collecting and reading ALL your reports, labs and visit summaries as you go, of course. No one is more likely to read these papers more closely than you. Even if you don’t understand them, which is pretty typical, you will understand the thinking behind your diagnosis. Watch for any errors as to the tests taken. Are they complete? What has changed over time? Are the meds accurate listed? Is there is something that simply does not make sense?

What else could it be?

If things do not improve after a reasonable period — you get to decide that period — or get worse, ask the most essential question, “What else could it be?” This may shift things from a less general diagnosis to one which is rarer, or masked by another health condition. Ask the doctor to justify his thinking, and if what he says makes sense to you. That bum knee may not be the cause of the several new falls. Maybe the new high blood pressure medication from another doctor (or this one) causes you to be dizzy, making you fall, reinjuring the knee. See how this works?

Getting nowhere? Or are they just wrong?

It’s hard to change doctors, especially if the diagnosis seems wrong or if errors have occurred in the process. Patients fear that they will be labeled as trouble makers. They may not think the new doctor will be objective with a colleague’s patient, or that there is not a more accurate diagnosis. How does one ask for a second or third opinion or a referral to a large medical center?  You will have to practice saying, “I know you have been working with me on this for some time, and that you want the best diagnosis and treatment for me. Now it seems time to send me on to another medical center/a more specialized treatment center/Dr. So-and So. I will need to gather all my reports and histories, and know you can make this efficient for me.”

Play an active role in your diagnosis and treatment, and do so at the outset. Patients are too often late to realize this, and far too sick to do so effectively. Don’t hesitate to ask for help from friends and family, and from social workers or patient advocate in the system. Again, be like the parent who must protect and nurture the child, and do the same for yourself.

 

 

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Patients as Partners: Member Peggy on the diagnosis journey (Part I)

Posted May 5th, 2016 by

Last week, Team of Advisors member Jeff kicked off a series of conversations about the Partnership Principles with his thoughts on partnering better with your care team. Today, Peggy (peggyznd) digs deeper into one area where strong relationships are key: getting diagnosed.

 Peggy draws from her own experience with kidney cancer and breast cancer to answer some important questions patients face in their diagnosis journey. Check out what she has to say about advocating for yourself below, and stay tuned for more from her soon!

How do I advocate for myself?

When you need to see a doctor for a new or a recurring problem, you are told to “be your own best advocate.” Sounds good in general, but is it really necessary?

Answer: YES. You have tried to figure out what is wrong and you need help. That sore knee is just not healing, or that odd breathlessness seems more frequent. Your family is tired of your complaints or you just “know” something is wrong.

Practice telling your story to the doctor, completely and accurately, so he might really listen to all of it. He may interrupt you within 18-20 SECONDS, studies show. If you are prepared, you will be more likely to say, “Let me complete my explanation of my symptoms or my family history.”

Before the appointment, write out what has happened — why you need a doctor. Be exact. Say “Seven weeks since my fall,” not, “This happened after our vacation.” Explain that you iced and elevated it twice daily for two weeks, and have been wearing a knee wrap ever since.  Say that you take “extra-strength Advil four times a day,” not that you’ve been popping pills ever since.

Explain any other meds you take and why, any history of being slow to heal, or that you are worried that this could be bone metastases like 10 years ago.

Give the doctor clarity about your situation and concerns as possible. Be honest about the level of pain, the interference with your daily life — that you cannot brake the car with your right leg.

If these are more vague symptoms, start a daily diary. Include shifts in food, bowel or sleeping habits, when and how the dizziness occurs, any medications, new or old and prescribed or not, and your own thinking on these symptoms.

Do some basic research. Check if that new medication interferes with an existing med, and if you are taking it properly — with food, one hour before meals, at night. Older people must be alert to this, as age will affect the ability to metabolize medications. Multiple meds from several doctors? Ask your pharmacist to review them for harmful interactions. Plan to bring all those meds (yes, even the ones which are “just” supplements or vitamins) to the appointment.

 

“We don’t want to be a difficult patient by questioning the diagnosis or the need for some test. Yet these questions may lead to a more accurate diagnosis.”

 

What if my child was the patient? How would I handle this?

Consider a new mother bringing a sick child to the doctor. Both mother and child are “new” at this, but know something is wrong. Mom comes in with specific details — a fever that disappears in the day and is back at night, sudden bouts of diarrhea, pulling at the ear, and so on. The doctor uses these details to diagnose a food allergy or earache, prescribes a treatment and sends mom and child home. But Mom is given a series of things to watch and do. She will know that this should clear up in 8-24 hours, not “pretty soon,” that an increase in fever should be reported, and a very high fever might require a trip to the ER. She communicates on behalf of the child, ready to respond when things go wrong, and knows to take the child to the ER, to the office or to prep for a specialist.

Adults don’t do this for themselves. We take the new drug without discussing others with the doctor. We don’t fill the prescription because the diagnosis “just doesn’t seem right” — but don’t discuss this with the doctor. We hide the excessive alcohol use, or the very odd rash in a very private place, as being irrelevant to the discussion at hand. We don’t want to be a difficult patient by questioning the diagnosis or the need for some test. Yet these questions may lead to a more accurate diagnosis. The thoroughness of the mother with the pediatrician might be a model for all of us who are too passive in dealings with our doctors.

Do I have the right diagnosis?

Keep in mind that a diagnosis is really more a “working” diagnosis. It could change as the treatment and/or the disease progresses. There is often a great deal of uncertainty in that diagnosis, and is based on observations in large numbers of patients, who may or may not be exactly like you.

Keep tracking your symptoms, whether you are given any medication or treatment. Ask the doctor how long it might take to alleviate the problem, what might make it worse or better, and what might require a second visit to the doctor. If the problem persists, reach out to that doctor again with your questions.

 

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Patients as Partners: Member Jeff on teaming up with your doctors

Posted April 28th, 2016 by

This year, the Team of Advisors has been thinking about partnerships in healthcare. They introduced the Partnership Principles, outlining ways to make the most of your relationships with the many people you encounter in your health journey — medical students, clinical trial coordinators, and “normals.” Now, they’re each sharing personal stories about these principles in action to kick off conversations about partnering. First up, during Parkinson’s Awareness Month, Jeff (Deak80) shares his experiences finding the right doctor and looking for “red flags,” communicating effectively, and sharing responsibility in his care.

 

As part of the Team of Advisors, we’ve been tasked to think about how we partner in our healthcare. Here are some examples of where, and more importantly how, I put the partnership principles to use. Remember that using the partnership principles is not a quick fix nor for one-time use. It’s important to establish a strong base through consistency of use and recognition that an effective partnership is based on a mutual respect and building a long-term relationship.

Know your needs in the partnership

Starting last December, I had the opportunity to put the partnership principles to use. Changes in my Medicare Part D prescription provider were driving me to change my Primary Care Provider (PCP). My previous year Part D insurer eliminated one of my Parkinson’s drugs from their formulary list. When I reviewed my options for prescription coverage (i.e., all my medications on an insurer’s formulary list), I had only 1 Part C HMO plan which met the requirements. (Those familiar with the basic construct of Medicare know that with a Part D plan you pair Medicare Supplemental Insurance to get complete coverage, or you use a Part C Advantage plan which covers both Health and Prescriptions).

Fortunately, my Parkinson’s specialist was covered under this HMO, but my PCP was not, so I began the search. I used the insurance company’s “Search for a Doctor” capability against a set of basic requirements:

  • Within 10 miles of my house
  • Has an internet healthcare rating of 3.5 or greater. (There are multiple rating services, I use this as a guide, not a rule.)
  • If they are part of a doctors group that has provided care to me in the past, was it a good or negative experience?

Using this basic approach, I was able to identify two doctors at the same practice as a potential PCP. I called, and the one with the first available appointment became my PCP. Notice that the selection process of my PCP was short and not overly taxing. One reason for the expedited process is that during the first few appointments I am watching for “red flags” or areas of concern. If I encounter too many “red flags” I move on to another doctor. As indicated below, I did encounter too many “red flags,” and quickly selected another PCP. The only change I made to the new search is I expanded the range to 15 miles. I have met with my new PCP and I can tell that this PCP will be a much better match to the partnership principles than the first. 

“As patients we may have to put more effort into the partnership to make it work…I am OK with this since I have the most to gain in the partnership.”

Establishing an effective patient-doctor partnership requires effective and efficient communications and recognition that a 50/50 partnership never exists. What this means is, as patients, we may have to put more effort into the partnership to make it work (>50%). Personally, I am OK with this since I have the most to gain in the partnership.

I look for effective and efficient communications within the doctor’s practice in two areas:

1. Does the office administration team communicate effectively with each other?

I have left more doctors due to poor office support and the office’s inability to manage a schedule than doctor/medical issues. The office administration is a key member of the doctor’s team. They are responsible for a lot of the information getting into your medical record as well as managing your access to the doctor. Some of the red flags to look for with the office administration are:

  • Is some erroneous information sneaking into your medical file? A recent experience of mine in this area is that my birth date was entered incorrectly. Although I appreciated being 10 years younger, a lot of medical decisions, tests, etc., are driven by your age. I called three times over four weeks and they still had not corrected when I changed PCPs.
  • Does the office run on time? I don’t mean necessarily to the minute, but are they even close? After relocating from Seattle to Boston, I selected my Parkinson’s specialist based on the recommendations of my doctors in Seattle. Although the doctor was medically very good, the office frequently ran over two hours late in the afternoon. These delays caused me significant stress. I was also working full-time at this point so the delays were also impacting work. Needless to say I changed specialists to one that was medically very good and the office runs almost always within 15 minutes of being on time.

2. Does the doctor’s office have the tools to communicate effectively with the patient?

You will hear phrases such as “patient portal” or “electronic medical record” (EMR) or “electronic health record” (EHR). In either case, these are referring to the system that a doctor typically uses to communicate with the patient. Usage varies between doctors. The PCP I now have is an active user of the EHR system. Even if your doctor is not an active EHR user, make sure you are. Access to this system provides you direct access to medical records (test results, surgeries performed, etc.).

Communicate effectively

Typically, I send an email about a week before my next visit to my Parkinson’s specialist. This approach provides me the opportunity to:

  • Document how I have been doing since the last session
  • Outline the objectives for this session
  • List the questions I have for this session
  • Allow the doctor to engage other resources if needed

More importantly it helps me organize, prioritize. Additionally, there is a much better chance of me remembering to cover everything in this email versus remembering onsite. Although my memory is still pretty good, relying only on your memory is setting yourself up for a disappointing meeting.

Share responsibility

Take personal ownership of my health. I am always trying to improve my situation. I attempt to eat right, get enough sleep and exercise regularly. I also put the effort into an effective patient/doctor partnership. As I mentioned above the patient/doctor partnership is not 50/50. I am not sure what the ratio is, but since the patient has the most to gain, logically they have to put the most into the partnership.

Finally, I found there’s a lack of real partnership in a lot of medical decisions. This lack of partnership is not just limited to the patient/doctor relationship. If you have multiple specialists involved, you may have to get them to meet together to discuss your case. Until you do, I have found that doctors follow a very linear process, and that joint decision making often does not occur.

You are your best patient advocate, so step up and take charge.

 

 

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