Fostering the Patient Voice in Medicine | Sarah Kucharski

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media.


Sarah E. Kucharski is a patient advocate, speaker, writer, patient, communications and health care consultant

Sarah’s Story

I got  involved in patient advocacy because I am a rare disease patient and as a rare disease patient it is extremely important to be able to be actively engaged in care to take a certain responsibility for directing your care, because you’re yourself 24/7, 365 and that's a lot more time than the doctors will ever really get to spend with you. I was diagnosed with rare disease when I was 31 and it actually came about because I had done a lot of investigation into my own care. My background is as a journalist and so I'd read all the information that I could get my hands on, done the research, read the medical journals and actually written an email to a doctor at the Cleveland Clinic and said, I know that sounds kind of crazy, but I think that I have this rare disease. She wrote back and said, I think you're right.

My medical history had been really complicated, for years as a teen preteen, I'd actually presented with gastrointestinal trouble and nobody ever thought GI problems, vascular cause. It took a very long time for us to even get to the point that anyone started looking down that path. I went through having triple bypass surgery that ultimately failed. I lost my left kidney. I had a stroke, four brain aneurysms, three of which were coiled and a gastric rupture. After having that in a period of about five to six years, that's when I said he didn't. Nobody has just this bad luck, like there's got to be something more here. There's got to be something overarching and that's when I really got serious about doing my research and reach the diagnosis.

Isolation & Rare Disease

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media. That without the Internet, without twitter and Facebook, or even registries and individual hospital systems, their forum board, etc.,, it would be so incredibly hard to find a patient community. We can maybe be a little less particular in that maybe a person doesn't have to share exactly our same diagnosis, but they are a rare disease patient too. So they understand some of the struggles of achieving diagnosis, of routine care, of having anybody else who says, you know, yes, me too, I know what that's like.

Health & Patient Empowerment

As far as my health, knock on wood, everything's actually pretty good right now. Things have been quiet, from just a pure health standpoint, I'm doing great. Thinking about the patient experience and its role in health care for rare disease patients, there's a saying of when you hear hoofbeats look for horses, but we need providers who are willing to entertain the notion that sometimes hoofbeats actually are zebras.

We need people who are willing to think outside the box and be curious. Curiosity, I think is one of the most valuable components of any person is what pursues you to find answers, to explore things, to get new knowledge about anything and so I would encourage that risk taking, that curiosity and if we can use that in a way that advances care, that is not reckless. I think perhaps sometimes people think of curiosity and in rare disease diagnosis as trying to be house MD and it's not necessarily about that. It's about really just asking the questions to explore the possibilities.

Rare Disease & Stigma

Having a rare disease inherently. I think people they hear that and they pause for a moment of it may very well be based in fear of what is this thing? Can it impact me? Is it transferable? Anything like that in rare diseases are really so much more common than people realize. The last statistics that I read about rare diseases was that combined, they affect more than like aids and cancer combined because there are 7,000 known rare diseases. It just means that we're a very fragmented population, but chances are, you actually probably know someone with a rare disease and there are diseases that you may have heard of that get a little bit more name recognition that it's not necessarily as rare as you may think, in a way. It's not something to be afraid of because actually research into rare diseases has unlocked information about many more common diseases that when you look at research studies and research arms that pursuing the mechanisms of these rare diseases, we can find out so much more about things that are more comments such as alzheimer's or diabetes.

Outlook on the Healthcare Environment

My overall outlook on the healthcare environment has changed over the past six years or so. In a way I feel like I used to be more hopeful because I was also more naive. Seeing how long change takes is maddening and depressing in a way. We're still trying so hard to push some of the same needles that we were trying to push years ago. I'm not someone who's been at this for 20, 30 years and I'm frustrated. There have been things that have happened politically that have pushed us backwards and I worry that for people like me, we may lose some of the protections that we’ve gained. I try very hard to maintain a sense of optimism and actually one of the guys here at Planetree, his name is Alan Manning and he's actually, I think VP of Planetree. He gave a wonderful lesson on hope as a speaker here a few years ago that he said; hope can change, hope isn't a stagnant thing. I had always worried that the people who felt like they hoped for change weren't maybe doing enough to impact it, but we can hope for different things in that whole change along the pathway that it grows and it becomes something that expands based on what we've learned. That's the first definition of hope that I've ever really liked. It makes me feel like it does respond to the changes around us.

Advice to All

I want to encourage people to stay at it, to keep trying to make a difference, to maybe know when they get into it that the needle move slowly or at least know that they're not alone in feeling like the needle is moving so slowly. That may be a different problem that we have to solve. We talk about physician burnout, we talk about patient burnout. How can we address burnout from trying to make things better, from trying to find solutions from getting ourselves to a point that we're not going to give up.

Planetree’s Impact

The Planetree organization and this conference is something that I learned about I think three, maybe four years ago and I was utterly shocked that I had not heard about them sooner because this was a group that I could say was actually doing everything right. That how they're approaching care, how they're focusing on patient centered care, but from a very provider focused angle is really interesting. It's really encouraging and it's something that I as a patient support because we often talk about patient experience as being something that’s so patient focused without talking about the people who are actually supposed to provide the care, and caring for those people. Making their environment, their jobs, their reward system, something that is conducive to a healthy care environment, that's only going to benefit all of us. I hope that more people get involved with Planetree. I hope that more systems see opportunities for patient engagement that aren't solely patient focused, but that we have opportunities to contribute to measures that will improve provider staff, employee care, so that they can do a great job of caring for us.


Collaborating & Co-Designing The Future of Healthcare, Julie Rish, Ph.D.

"The future of patient experience relies on meaningful strategic (maybe) relationships with each other. Where we're talking together, and where we’re coming together to solve these problems, Julie Rish, Ph.D.". 


Julie Rish, PhD is a Clinical Psychologist, Director of Design and Best Practice in the Office of Patient Experience at the Cleveland Clinic. Dr. Rish is also the Director of Communication Skills Training and an Assistant Professor of Medicine at the Cleveland Clinic.

 

Julie Rish, Ph.D., MA, Role at The Cleveland Clinic

I have spent most of my professional career helping people with health behavior change. That blends nicely to the work that I do in patient experience because it is about how do we change and adapt our behaviors to best support our mission and cause in the organization and come together. As the director of communication skills training for a medical school, I'm active in teaching our students what communication with patients and each other could look like and potentially should look like in bringing in that next generation to health care.

Most of my life is in patient experience, in really leading efforts in one; how do we partner with patients, their family and their support persons to really improve care and to reimagine what that partnership looks like, so that we can be very strategic to maximize the full potential of partnership and to manage the complexities of health care together as a community.

The other part of my life is complimentary as applying plain design thinking to our work. So, in a variety of settings having really great collaborations across the Cleveland Clinic. Questioning, how do we do that in a way that brings together all the stakeholders to design something better for patients and for our people.

Discussing Patient Experience & Humanism in Medicine

I think medicine is inherently human. The art of medicine without relationships---We're not just technicians. Similarly, providing excellent patient experience is about meeting people in a very relational human way. I think that you can't disconnect those two things. Optimal healing can’t occur without the humanity of medicine and true understanding of another person sitting in front of you, without being able to empathize with your experience.

Relationships are healing in and of themselves. When we're connecting as people it's healing to me as a clinician but it's also healing to the person that's sitting in front of me. We have to think about going above and beyond what we can do medically for someone.

Achieving excellence in Patient Experience at the Cleveland Clinic

What we've done so beautifully is really put some stake in that, that we are going to care about our patients, we’re going to care about our people and we're going to invest a lot of energy in both. Trying to understand one another, trying to appreciate each other's perspective, see things through different lenses and design it together. That's a beautiful model that will help us improve as a system but also help us improve and transform health care.

Barriers to achieving humanism in medicine

There’s a lot of barriers to being human in medicine we know about widely publicized, burnout in clinicians. The detrimental effect that has on them individually but also on patient care. It's double edged and it's complex to solve. Also, add the burden of documentation. Providers spending more time in documentation than they are in front of the patient. Trying to find meaning and purpose in their work and the complexity of trying to solve that. The knowledge and the explosion of that is another barrier in some ways. Trying to stay current when they're so much information is hard. How many hours a day can one possibly invest, then how are they finding balance in their life and spending time outside of the walls of the system that you work?

There’s a lot of barriers that equal time and task pressure. How can I be present in this moment and not thinking, three steps ahead or three steps behind but just to be present in the moment? When you do that you can find meaning and purpose in your work. The barrier is how do we overcome those obstacles to create moments of presence? Being mindful and truly connecting a human level. In doing so, that's where we can find restoration and purpose and get back to why you chose this profession, this career, this entity in the first place. That’s our greatest opportunity right now is to try to navigate those barriers in a way that is optimizing the human connection.

The importance of Humanism in medicine

The importance of clear. I talked about that relationships are healing and that it's hard to create a relationship without being present and authentically yourself. Therefore, if you're struggling with burnout and it's easy to depersonalize a situation and it creates some distance between you and the person sitting in front of you, it's also hard to create the meaningful moments. That equal satisfaction with your career, with your experience in that moment and with the quality of care.

Trending towards a barrier free healthcare delivery system

Navigating the system in a way that we are creating that is our greatest imperative. We have to think bigger than clinicians. We absolutely have to continue to invest in our people, that's clinicians but I think that's other members of her our clinical teams and our staff in a health care system that we see burnout in many different places.

Being thoughtful about what we’re and how we're investing in our people was really important. Thinking bigger than just the people, that its systemic and if we're asking people to spend half of their day in documentation and in the evenings and all hours of the night then how can we possibly expect them to overcome these barriers.

Thinking systemically, what does healthcare need to do to better support our clinicians. The burden of documentation, policy and the pressures that we're placing on top of them. While also thinking, how do we change the top down but also how do we support from the bottom up. In addition, equipping people with the skills to communicate effectively to connect to meaning and purpose in their clinical encounters. In some ways that's by just teaching someone how to listen and to empathize with someone’s experience and perspective and connect to that as a human.

Again, I would transcend more than just our clinicians. I think it is our nurses, it's the other people that are touching our patients. From the person that checks you in, to the person that you speak to on the phone when you're trying to navigate and make an appointment, to the information that you get when you leave the hospital. There's so many different touch points that we have to connect to.

Technology & healthcare

These types of solutions have to be co-designed. Oftentimes it feels like we are pushing solutions out and those solutions need to be brought together from the people most intimately affected. So our patients, our people, our clinical staff, our non-clinical staff. Those people need to come together to define what that solution looks like and what the need is.

Oftentimes, I feel like we're just creating solutions or “hey great lets give you some communication training”, but is that the training that you need is that what's going to solve the problem and is this actually the problem to solve or the opportunity to innovate around. I think if we are not talking to those people most intimately affected at the beginning and throughout, I'm not certain that our solutions are going to work and that we're actually going to be transformational.

Patient Experience In Its Current State & Future Outlook

In the future our patient experience relies on meaningful partnerships and collaborations. Intimately integrating our patients, their family and support persons into our work and having them help us co-design care, from the beginning and from all phases and all levels of the organization. If we're not doing that then we run the risk that we're not actually providing the care, the needs, the solutions that are patients really need.

Bringing them in and sharing that space with them in true partnership, not in a focus group setting. The true partnership where we are identifying the problems to working alongside, to creating solutions together and testing them out. The patient experience relies on our willingness and openness to do that together. The future of patient experience relies on meaningful strategic (maybe) relationships with each other. Where we're talking together, and where we’re coming together to solve these problems.

Meaningful Integration Of Technology

I would suggest that technology needs to be seamless, in that it affects both of our patients and our clinicians. It needs to solve for the tremendous burden of documentation and the non face to face time that our clinicians are struggling with. It needs to facilitate making health care more simple for patients.

If you think about we what exists right now there are thousands of apps and thousands of different platforms that someone could go to. How do you know what's the right app to download or how to even find the right one the problem that you're trying to solve. We in health care need to streamline those applications in a way that's meaningful to our patients. That's going to help them navigate the system and connect them in seamless ways.

I would say the same for our clinicians. Technology needs to create the moments of connection. The human moments and take the burden out of some of the non-human moments for clinicians. It needs to solve for both ends of that spectrum to simplify the experience of health care. Otherwise, you need an app to navigate the apps.

The most important thing is being willing to be vulnerable, humble and to learn from each other. To be thoughtful about how we partner with the people around us, how we learn from each other, etc. All of that takes deep understanding, empathy and really trying to appreciate someone else's experience and perspective.

If we’re not doing that we're not really solving at that intersect, that’s really where we need to be. What are the solutions that make the most sense for the most people, at the right time? To me that's transformational! So, we could setup really great population health efforts, but if it's not the practice, the services or the values of the community that it serves, then what have we done.

I think really being thoughtful to first understand the people that are out there. Really empathizing with that, then solve those problems together and create those opportunities together. That’s what's exciting about health care is the great potential of what you can do together and in a collaboration. I’m excited to be a part of that!


Dr. Rish At The Cleveland Clinic | Twitter | #PESummit

Humanism in Healthcare, Richard Levin, MD

"We are extremely interested in moving the power curve from a patriarchal classical circumstance in which doctors give orders & provide directions to patients to one in which the scientifically excellent care is developed together collaboratively". 


Dr. Richard Levin, is the President & C.E.O. of the Arnold P. Gold Foundation, a position he’s held since 2012.

 

Discussing Patient experience & humanism in medicine.

The relationship between doctors and patients has been existing and catalogued in the west for about 2,500 years and what is most important about it is the establishment of a human connection. The opportunity for the patient and doctor to be as close to one another as possible with trust, a sense of safety, a sense of the awesome responsibility that a doctor has to take care of a patient. Modern humanism and The Gold Foundation has been working on this problem for the last thirty years.

This is our 30th anniversary. The problem is more complex now because systems of care exist now where none existed previously. What do I mean? A system of care can identify a best practice which will involve the creation of a workflow; a series of work flows to manage an acute illness. Let's say that best practice was developed for the general population not for an individual and while compassion, integrity, empathy, responsibility, respect, resilience are all important attributes of someone who's practicing health care with humanism, humanism requires something more, something beyond patient centered care; A co-production of health. If there is a north star guiding the foundation's work right now, it's the recognition that we have become the champions of the human connection in health care over these 30 years.

We are extremely interested in moving the power curve from a patriarchal classical circumstance in which doctors give orders, provide directions to patients to one in which the scientifically excellent care is developed together collaboratively. A Nobel Prize in economics was awarded to the woman who originally came up with this notion that the best services will be co-produced by the receiver and the provider, not just the uni-directional in nature. Therefore, we are now going forward trying to make certain that in every health care encounter between a clinician and a patient we make sure that there is enough time, enough trust in the human connections so that the health care to be provided can be a collaborative decision of doctor and patient.

Co-Production of Health care

I'll give you an example of what I'm talking about; At the annual Jordan Cohen humanism lecture given at the annual meeting of the Association of American Medical Colleges last November, the talk was delivered by Don Berwick. The co-founder of the Institute for Health Care Improvement and for a while President Obama as director of CMS responsible for the development of Medicare and Medicaid services throughout the country. He has been a leader in the reform movement in health care. He suggested that the things that patients could be taught to do themselves so that they had a sense of greater autonomy in caring for themselves and dealing with an illness were much greater then we currently give patients the capability of understanding.

He showed several videos in a research context of a young man who had a genetic disorder that required a feeding with a nasogastric tube every night of his life while he slept. This young patient was taught to insert the nasogastric tube through the nose into the stomach by himself and he mastered it very easily. He then set up the infusion of the nutrients solution and took care of himself in that fashion.

Then he realized that one of the things that about illness that was really bothering the other pediatric patients he dealt with in the office when he saw them was this lack of autonomy, this lack of self-assurance capacity. He made a video to teach everyone how to do that, and it's very popular as it as an example of what the coproduction of health is actually about.

Things that the health care system provides but things as well including education in which the patient and family bring to the encounter critical elements that must be incorporated into their care plan. This is what we imagine will be the optimal patient experience in the mid-21st century and we are working with like minded partners across the country to try and make this a reality. When Dr. Berwick showed the video of this, there were gasps in an otherwise very sophisticated audience.

Chronic hemodialysis is extremely complicated and potentially dangerous. It requires making contact with an indwelling artery and vein with a catheter. Making certain that the site is sterile, making certain that the dialysis proceeds without to arrangements in the salt content of blood. It is quite complicated, but nothing beyond the sort of daily activities that any human might actually do. In a small study a number of people that have been taught to give themselves hemodialysis at home with the machinery necessary and all of the elements that make it safe for a given patient to do that. The sense of self actuation that allows a patient who is dealing with a chronic and serious illness, the failure of a major of working is astonishing and that's what the video revealed.

From the young child delivering nightly nasogastric nutrition to an older patient with renal failure kidney failure on chronic hemodialysis it is possible to involve the willing patient and family in entirely higher level of care and decision making than we have been used to in the past. Shifting that power curve from doctor, nurse, health system to more equality and collaboration with the patient and family we think it is a higher order of patient centric care.

Equipping Physicians for the Future of Medicine

Medicine has developed like any field over a very long period of time. There are few organizations, few fields that have survived 1,000 years of medicine and physicians have survived for 2,500 in the West if we mark the beginning with Hippocrates. For most of that time the only tool available to us was the surgical knife. We didn't have a drug of any variety that were in fact proven to be of value in the treatment of anything.

Penicillin became widely available in the 1940’s after being released first in 1928. And everything in the armamentarium, the CAT scans, the M.R.I. microsurgery, the ability to do robotic surgery, knowing about the anatomy of an internal problem but without cutting, all of that has happened in a very short period of time since the 1970. Physicians are trying to catch up to the changes that have occurred in technology all of which promised to return to them more time with the patient. That hasn't worked out as planned. The electronic health record unfortunately while developing rapidly is still a halfway technology. Most primary care physicians indicated in surveys that they spend two hours typing after seeing patients for every hour that they spend with patients in the hospital.

The annual survey by Johns Hopkins of a residence life indicates that probably 60% of their time is spent typing and those electronic health records at the moment are real time continuous wallets of practice issues, not the standard narrative that describes to anyone who wants to read it, including the patient and family, what the nature of the illness and the lives that they have led are actually like.

Barriers to Humanism in Medicine

We have extraordinary barriers, new ones of a disruptive technological age that have dramatically modified or what the experience of being ill what the experience of trying to remain healthy is actually like. We have the deep belief by most practitioners that molecular biology and the genomic age will indeed provide cures for most of the chronic illnesses that we encounter. That was a belief that began back at the beginning of this century and we now know that it's going to take years before those cures are available.

The notion that the cures and technology will take the place of the human connection is wrong. We need both and the touchstone for The Gold Foundation is scientifically excellent compassionate and collaborative care in every health care encounter. If we can reach that we truly will have an optimal health care system and the patient experience will be the best that it can be.

Medical education changed dramatically in the United States with the publication of the Flexner Report in about 1910. Abraham Flexner was an educator and was hired by the Carnegie Foundation to write a report about what medical education was like in North America. He spent a couple of years and visited most of the medical schools in Canada and the United States and published a report that showed that most medical schools were not up to the chore of producing doctors.

They were apprenticeships without a scientific method, the science underlying developing medicine was not emphasized or provided in this context. A better example of what medical education could be like were discovered at Hopkins University of Pennsylvania and Harvard using those as a model he proposed the system of medical education that we have in place now which is two years of deep inquiry into the sciences underlying the practice of medicine.

This was the method used in Europe in late 1880’s which is there are induced to revolution. We switch from wearing black coats to white coats, to identify the fact that we were practicing a new kind of science. The second two years of medical school were designed to be done in a teaching hospital. The requirement that he wrote was that those teaching hospitals have the same ethos, the same interests as universities that is education continued education of doctors.

That was the standard and remains the standard today and it has resulted in a kind of wonderful meritocracy which admits students based on their apparent capacities but does not take into account the E.Q. the emotional quotient of intelligence and does not take into account the inherent capacity of any applicant to communicate and communicate deeply with the patient in the model that we have discussed in the co-production of health.

The barriers to getting to optimal in terms of patient experience include everything from the selection process for medical students to the experience within medical school to the experience of becoming a doctor as a resident then and a young practitioner in which every element has been optimized not for the interaction with the patient, not to optimize the patient experience but to provide quality which is defined by efficiency and it's not enough.

We can do better and by taking a look at the epidemic of burnout of physicians and nurses because the systems are making administrators requirements on their time that should not be there all. Improving the health of the health care workforce and making that deep connection between health provider and patient in the coproduction of health. Those are the barriers that need to be overcome and it will take us probably another 25 years to get there. We've got a long way in defining what patient centered care looks like and I've suggested today that there's another step which is called the coproduction of health.

There are organizations in many countries that are approaching this problem logically and with a great deal of attention to what the experience of the patient is actually like. An organization known as PlaneTree which is headquartered in Connecticut has been accrediting hospital systems, health care systems, individual practices. I think in over 40 countries for 40 years this is their 40th anniversary and they have gone a long way to describing what is necessary to practice patient centered care from what must be provided architecturally all the way to the interactions that occur with patients at the most difficult moments of their lives.

Technology & Health Care

Technology has both allowed for revolution in the delivery of care and this will continue so that rather than spending six weeks in bed after experiencing a heart attack and having six months of physical therapy or disability after a hip replacement, patients without co-morbidities are sent home the day after a hip replacement. It's extraordinary the molecular cocktails that there are and will be available to treat cancers and other chronic illnesses are wonderful.

The electronic health record is transportable but it's not the design that is optimal. All of these technological wonders need now to be incorporated as physicians had done for these two millennia into a system of practice and care that shares the responsibility for the care to the extent possible with the patient and the family. I think it's not so far away, it's not so difficult for us to figure out how to do that as long as this is an accepted goal of the entire system with each health system contributing to it to the best that they can.


Anna Legassie | Six Hips and Counting

"We need transparency across every aspect of patient care right now. I know that it's very easy to point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases" Anna Legassie. 

 

Anna Legassie is an Athlete, Writer, and Advocate.

Welcome to Anna’s Health Journey

I have been living with systemic juvenile idiopathic arthritis SJA since I was eleven. I’m also one of the lucky few that has a positive rheumatoid factor, which means I have rheumatoid arthritis too. I have both auto inflammatory and autoimmune arthritis. I started becoming symptomatic when I was eight with mostly knee pain that was like my initial complaint. My knees hurt, I was a really active kids, climbing trees, running, riding my bike everywhere.Our pediatrician at the time just basically said “This is probably growing pains, take some children's Tylenol and keep an eye on things”. Over the course of the next few years it went from just knee pain to sort of all over joint pain, body aches, fevers, nausea , headaches , fatigue, and excessive bruising. I remember getting hit during a basketball game, like somebody just hit my arm and the next they had this massive bruise, massive swelling. Then finally I started getting rashes that would sort of cover my neck all the way down to my belly.
When I was in sixth grade I was eleven years old, I played the clarinet, I was very cool. I was ready for Christmas time and we had a big rehearsal for the holiday concert. We'd been sitting for a few hours and when we went to stand when we were done I just collapsed at that point. It was really just that for those three years I had been sick and my disease was advancing but we didn't know. My mom was already on the way to school to pick me up. I was admitted directly to the hospital, tested for childhood leukemia and cancers and it just took a while of ruling things out before somebody said “let's start to look at autoimmune disease, auto-inflammatory disease”. I was 11, it was December 21st, days before Christmas and that was when I got the initial SJA diagnosis. A few weeks later I found myself with really intense chest pain. The thing about SJA that's different than a lot of childhood arthritis is that it can cause inflammation in the liver or spleen, and enlargement of lymph nodes which is why they actually were looking at childhood cancer, leukemia, anemia as well as inflammation in the lungs and the heart. Here I am having this chest pain at the age 11 and by the time everything sort of transpired figuring out how do you treat an eleven year old with chest pain we found ourselves in the local ER.
I was in acute congestive heart failure because of such a massive buildup of fluid around my heart. We were airlifted to Boston Children's Hospital and was put in a medically induced coma for about six weeks really to protect other organs from failing as well. That was just a byproduct again of that the three years it took to get a diagnosis of my disease, as it kept advancing unchecked and we had no idea. SJA is a fairly rare diagnosis, so even after getting the diagnosis in the hospital people didn't really know what to do with it.Nobody thought well maybe you should have a chest X. Ray real quick on the kid before we send her home. I found a little bit of sort of stability for the next few years. Then at 14 I had both my hips replaced and at 15 I had surgery. So 14 was freshman year in high school; Both my hips replaced as a freshman in high school which still is a very strange thing to sort of think about that that actually happened to me. I would have had knee surgery on my left knee when I was a sophomore in high school. I had knee surgery on my right knee you know as a junior in high school. During that time it was actually when the first biologic drugs hit the market for rheumatoid arthritis.

Navigating Bureaucratic Insurance policies

I remember my pediatric rheumatologist wanted to prescribe one of those drugs, she was so excited. They first hit the market and they were F.D.A. approved for adults and I think in two years they got pediatric approval for them. We really finally thought we had some hope on the horizon for treatment, but unfortunately because this was sort of I don’t want to say experimental, but, new this is really the first time we had any of these biological agents. Our insurance company at the time wouldn’t pay for them. They said you know if there is not enough data in the pediatric population from a safety standpoint so no to those. I graduate from high school, I was eighteen years old and as soon as the calendar---it was literally just the calendar flipped and I was eighteen we could go ahead and re-submit the approval for those drugs and get started. Finally, around eighteen I had a little bit of sort of treatment stability in my life. We finally had something that was actually targeting the progression of the disease and not just symptom management, which is really what everything else is, whether it's steroids or NSAIDS. All they’re aimed at is managing the symptoms of the disease not its actual progression.

Living with chronic illness through early adulthood

Things are looking up, I go to college and I was still really healthy---well not healthy, but still a really active kid once I got my hands replaced. By the time I was twenty my right hip replacement failed for the first time. So I had surgery, had hip surgery again as a sophomore in college. I think I was twenty and then and from twenty to twenty six was really sort of chaotic both in my own life and my family's life. My mom was at the end of a terminal illness at that point and I was back and forth from school with her, my sister, my own doctors and sort of trying only keep my head above water at that point. My mom died when I was 22 and I came home from school permanently at that point to help take care of my younger sisters. I had quit my job and I didn't have any health insurance. So I was really self-managing my arthritis through those very palliative NSAIDS and steroids just with my primary care physician, because at that point I didn’t really feel like I could make my own health a priority. I really need to be there to take care of my family.
For a few years of me trying to re-enter the workforce and finish school and all that stuff. I finally had health insurance again and went to my doctor and started with new doctors. I was 26 and I found a new rheumatologist, a new orthopedic surgeon. My old surgeon had unfortunately retired. And the first time I met my new surgeon what was said was “I hate to be the one to tell you this but your hip replacements has failed catastrophically. There is absolutely no medical explanation for the fact that you're walking around. We need to get you in the you know OR A.S.A.P.”.I was back in school at the time like, wait a second. I need to finish spring semester and then I want to take a six week summer class that goes from June into July”. I was like “Let me finish that class and then we'll do surgery”. So I had a bilateral revision of my hip replacements when I was 26. I didn't really understand about that surgery before I've done it is you're going to be 100% non weight bearing on both sides to protect both knee joints.
I needed to go to a rehabilitate hospital for several months after surgery. I had to relearn how to walk I don’t think people really think of that being an experience for somebody who has arthritis. I was discharged and me being who I am full steam ahead and back to work, back to school and my six month checkup which would have been in January the bone graft of my right hip had failed again and so I needed to have that right hip operated on for a fourth time. At this point I was overwhelmed. Just very mentally overwhelmed by what was happening and I remember asking my surgeon “What would happen if we didn't do surgery like next week? Can I do like an additional long term damage?” He said “You're really not going to do long term damage, you're going to be an increasing amount of pain. Think about the socket where your hip goes into and this last line that they put the end it had separated and it was on a single screw and it was rocking back and forth. It was just the eroding one side of the joint and it just rocked back and forth”.
I just said you want to just push this out a year like really since I was eleven years old I had  no normalcy in my life. I just want to work, go to school, hang out with my friends and go to Red Sox games with my boyfriend. Like I don't--you know what- pause, we’re just going to press pause on all of this. And so that's what we did and I had the surgery the following January 2011. That was my last hip surgery, almost seven years ago, which for a long time I wouldn’t even say that. I was afraid that if I said its seven years I was tempting the universe and I would bring this more pain and suffering upon myself.

Arthritis, Surgeries and Resiliency

It’s taken me a really long time to let go of that and just appreciate that I didn't do anything wrong. This is just the nature of this disease, because even after you have a joint replaced you still have active disease in that joint and it still attacks the replacement in the same way that it attacks bone. I've had some complications too that made that bone graft failed. So that was my last hip surgery which is very exciting. Then it was kind of a period of status quo for about five years and sort of cycling on and off different biologic drugs as we tried them and they failed and in 2016 I was really starting to have a lot of trouble with my left wrist, like gripping things specifically.
I remember trying to hold water glass in my kitchen and I dropped it and it shattered. My boyfriend Ken was running in from the other room he was like “What happened?” I’m like “I don't even like know, I just can't hold things”. Really what it is, I have just such extensive damage in the left joint--out the left wrist joint that there's compression of the nerves. There’s all sorts of just not happy things going on in there. But despite all of this I’ve really liked clung to being active as much as possible. So it wasn't just like grip strength at home. I couldn't put pressure on it, like downward pressure to do yoga which is something I love. I Couldn't even lift weights even -- a 5 pound dumbbell, I couldn’t grip to hold it.
So I went to my surgeon fully expecting him to say you know we just need to replace the joint or we need to fuse it. I told him that I didn’t want to do either of those things because more or less I will lose all range of motion in the joint. His idea I which is a little bit--- I'm going to say unconventional, but basically what he did is, he went in and severed five major nerves in the joint. What that does is it cuts off the pain pathway from the damage in the joint to the brain and it also cuts off some of the nerves that were misfiring. It’s only has about a 70% success rate which is why this is not the first line of defense that they go with. But one of the ways they do identify if you're a good candidate is that they go in and they inject the nerves with that they're going to sever with light-a-cane beforehand and if you get pretty instant release--relief rather you're a good candidate.
We did that, I was a good candidate. I did the surgery, I was back in the gym 10 days later with this big funky wrist brace on. And then four months to the day after that surgery I had my third knee surgery on my left knee. I had injured my knee running, but I also knew that there was a lot of other things going on in the joint. I went in, had arthroscopy surgery. They fixed the meniscus tear which is what I had hurt and they also just went and scraped out everything else. More or less bone in the joint, ready for a new replacement as soon as I say go. Some days I feel like go time is like tomorrow and other days I feel like let's put this off as long as possible.

Mental capability of Coping with Chronic Illnesses as a Child

I see this now as an adult and being really lucky to have nieces, nephews and all sorts of wonderful little’s in my life. Kids are so unbelievably resilient, it's just amazing to me. Kids don’t question certain things that we do as adults. Because I got sick at such a young age I didn't really have a normal that other kids did. So I knew that I was going through other things that other kids weren't but I didn't really question it. There was just here it was, much like well this is what I have to do. I have to take this medication or I can't get out of bed. I have to have this surgery so I can get off crutches and walk again. I was on really high dose steroids. Of course my face swelled up, I was easy target I was an easy target for a lot of teasing, a lot of bullying. I think a lot of times kids bully kids when they're sort of afraid of what's happening and I think a lot of my peers saw a very pretty popular healthy athlete one day and somebody who was very very sick the next day. I think that even at a young age my peers probably in the back of their head appreciated that that could happen to them too.

Managing Trauma from having major chronic illnesses, multiple surgeries & consistent series of hospitalizations as a child.

The mind goes to a great length to protect itself and to sort of protect us as we navigate this world. I have been a patient the same hospital for 23 years now, I also work at that hospital now which is wonderful. But there are times when I am running to meetings and I cut through a different clinical part of the hospital and it might be somewhere that I haven't walked through in ten years. Very recently I was---I need to have an M.R.I. and so I went to radiology and they're like “Anna you know better. You know that M.R.I. has moved over here, you need to go here”. I was like “Oh right”. So I as running and I went down this flight of stairs and the flight of stairs was in the pediatric wing of our hospital and I was overwhelmed by this memory of when you're on crutches as a kid-----They probably do this to adults also, but I wasn't allowed to go home until I could navigate as many flights of stairs as I have to get home. so at my house growing up there is the front entry stairs and I lived in a split ranch, so once you came in there was the stairs to go up to the main living level.
I had to be able to successfully navigate two flights of stairs and this stairwell. I hadn’t thought of that in so long and all of a sudden I’m in this stairwell almost 35 years old and I was shaky and I had to sit down on the ground and sort of collect myself and just acknowledge that trauma of everything that I had gone through associated with that surgery and sort of like find a way to manage and let it go and get to an appointment and on time. But it's such a wide spectrum of how I feel about being sick as a kid. Some of it is like a very neatly packaged up into these sort of boxes, very compartmentalize. And even as somebody who goes to therapy religiously and is not embarrassed at all to say so, there are some boxes that we've just not unpacked and I'm not in any big rush because they’re so big to try to take on.
Then other days certain memories or traumas from being sick as a kid just come back and they hit me so hard and it's just so intense to try to weave those into the narrative of my adult life, because now I have an appreciation of really how intense that I had to go through all of this as a kid. How do you think that as a young adult and even to a certain extent as an adult now I am fueled by a good amount of anger and frustration with some of this and it’s taken me a really long time to get comfortable with acknowledging anger. I am like a very non-confrontational person. Confrontation makes me really, really uncomfortable, I don't like being angry, I don't like having fights, I don't like witnessing other exchanges.
It has taken me a really long time to just accept that it's okay to be angry about a lot of these things that have happened to me. And some days I’ll joke with friends and be like how are you doing and I’m just like “Well I'm just a little fireball of rage”. What I've been able to do I think, to a certain extent is acknowledge that anger and then always try to find an outlet for it. so on good days it's you know where I'm very active, it's going to the gym I'll go to the gym for two hours and it's like I don't want to talk to anybody else. I just want to go there and work through my own stuff and just deal with it that way. On my bad days it's just acknowledging that it's okay.
If you mire in that for a day it's not the end of the world and you’re not a bad person and you're not mentally weak. But as a kid I also had parents--I came for a feelings family. My mother's father was a psychiatrist. Being able to express and articulate emotions colorfully is accepted to my family. So I was given space to be angry, what I was never given space to feel was pity for myself. I was never allowed to feel bad for myself. I was expected to go to school when I was able to go to school, I went to school. When I was doing well enough to play sports or go to gym class that's what I did. I was expected to do chores and participate in my family. My mom would bring in laundry baskets and put them next to me and be like “Okay well you can’t vacuum, you can't set the tale but you can sit here and fold laundry”. My parents really tried to give me as much as much normalcy as they could but also still that space to be angry or upset or frustrated because I'm sure as parents they felt it too.

Advice to Chronically Ill Patients

It’s so hard to give other patients advice, even if we have the same diagnosis right, because a lot of the stuff that I've gone through for me sometimes feels like it pales in comparison to what other people have gone through. Then other times and I'm just going to say this and not feel bad about it, sometimes as the other patients I’m like “Can you just like get it together” and that's not very generous of me and I shouldn't do that because I don't know anything that's going on in their life, that there's just such a like wide spectrum of pain and disease progression. I think the biggest thing is finding an outlet that feels good for you. I strive to be super athletic and super active because that is such a core part of who I was as a kid. That sort of anger and that rage that I talk about, a lot of that stems from being a kid who was on the trajectory to be a state if not nationally ranked runner to being a kid in a hospital bed. So every time that I can fight and claw and take even like a little piece of that back, that sort of what helps me keep it together is feeling like I'm not losing ground and I still have part of that as my identity.
That’s not for everybody, it's not appropriate for everybody. I see so many patients that are passionate about art work or they sing or garden or they cook. I know patients that train animals. I think that you can feel angry, you can feel pissed off about all of this. You can feel sad, you can feel like down in that dark place. Now the sunken place is a very popular thing thanks to Kanye on twitter yesterday. But you have to find something that you want to climb out of the hole for. Whatever that is, you want to have kids, if you want to work, if you don't want to work, if you want to volunteer or whatever it is helping find something that feels like a good place to take all of this and direct it at that. The worst times in my life right now even as an adult and being somewhat well adjusted with all this are periods of inactivity when I can't go to the gym.

Perspectives on Achieving Human Centered Care; Advice to all Actors in the Healthcare Space

I love my hospital but it's not perfect because no system is and I think for patients with chronic illnesses in the biggest places that the health systems fail us is by being so sort of like locked into lab reports and that's live and die by the lab report. Good labs mean you're doing well and bad labs mean you're doing poorly. But there is not necessarily but the holistic approach of what that all means. My disease is pretty stable right now and that’s great. So sometimes my labs look good, but what I feel in response to them feeling good there can be a big gap. So whenever I'm talking to new patients about; how do you get to know your providers, how you advocate for yourself etc. I think it's really important that doctors and providers are able to look at the patient as a whole person.
These fifteen minute encounters that we have with our doctors and then they have no idea of the last four to six months of our life depending on the specialists that happened outside of those fifteen minutes. So I worked really hard to get my doctors and my care team to understand what are my life goals because treatment goals really don't mean much if they aren't supporting life goals. When you've been sick for a long time you're able to normalize a lot of things, you're able to normalize a lot of pain, a lot of suffering. you're able to normalize not being able to do things. And when I really decided that I wanted to get more active, that I wanted to lose some weight and feel healthier and happier as a whole human being, person and somebody in a relationship, where there's intimacy and all these different things that make you a whole person.
I realized that I wasn't doing a good enough job saying “I don’t think this treatment is working anymore and we need to try something new”. And so that's kind of I'm always trying to get you know help patients with is “What are your life goals and what you want to do? Do you want to garden? Do you want to be able to pick up your grandkids and have that not be painful? Do you want to walk around the block with your dog? Like what is your big goal in life right now that your illness is an obstacle to? Okay well your doctors need to understand that anything short of that is a failure on their part, which is kind of a harsh black and white way to say it but I think doctors should be motivated to help their patients live really full happy lives outside of their office”.

Most Urgent Need in fixing Healthcare Today

We need transparency across every aspect of patient care right now. I know that it's very easy to like point our fingers at bag of pharma and drugs are so expensive and they are and they shouldn't be in many cases. The fact is, health care as a good or a service or a product is the only thing that you buy without knowing the price up front. The lack of transparency by providers whether it's hospital or doctor or whatever physical therapist doesn't matter, the lack of transparency on what you're actually paying for your care is galling and should be illegal.
It would be illegal for almost any other service. The lack of transparency on the insurance side of what informs their decisions. We really don't know and of course we saw and I don't necessarily like to name names, but we saw a major plan recently come out and say we didn't actually review any of the information in the period of peer medical review. We didn't do that, so there's no transparency and how coverage decisions are being formulated and then when you do get to pharma there's not a lot of transparency in how they price their drug. So this lack of transparency just to me is one of the biggest drivers of cost because--these three systems are not talking to one another. These three systems are entities have no incentive to work together. There’s so much tension that at the heart of it all is the patient and patients are suffering, but the lack of transparency at this point I just don't understand how much longer we can let this go on.

Transitioning from Patient to Patient Advocate

I was given a lot of agency in my care as even a very young child. I was always allowed to question things and to question decisions and ultimately if it did necessarily put my life at risk I was allowed to say no to things. I made judgment calls when I was in high school to come off certain drugs because for me a lifestyle standpoint I could not take the side effects anymore. So advocating for myself has always given me a sense of empowerment in my own illness. Really it was six or seven years ago I had sort of reengaged with different foundations and was back doing a lot of fundraising.  
Fundraising is great and really necessary, but when I talk about things that fill you, fundraising is definitely not one of those things. And I was approached by an organization to attend their advocacy summit in D.C. and I just remember sitting in this room, like a hotel ballroom for a conference and I was like interim, was just like oh my gosh this is what I was supposed to be doing. I had no idea that I could take my story or what I wanted to do to advocate on behalf of myself and it can be powerful for other people.

A Wish for the Future of Healthcare

I think “patent-centered” is a word that's getting used a little too loosely right now. I think that a lot of organizations set out to be patient centered and what I see is their biggest shortcoming, whether it's payers or drug companies, startups, hospitals, whatever is their design solutions for patients, whatever they might be within the healthcare system etc. They get down this process and they have version one and two and three and then they invite patients to the table to basically weigh in on whether this solution is valuable. It's such a waste of time to everybody and at this point I say no to these opportunities because I'm planting my flag on the fact that I want patients involved from the word go.
If you're calling something patient centered no matter what it is, whether it's on the state side or the federal side, F.D.A. The F.D.A. is always forming new patient groups, whether it's a payer, hospital or pharma company wanting to do some nice, happy feel good P.R. If patients aren't in the room from the jump then you've already failed. The other thing is that as we look to patients and we empower them to be a part of this and drive process and drive change---when I see patients paid I feel like the system just sort of continues to take from us and suck us up, chew us up and spit us back out. It's not really equitable to ask patients to help drive change without compensating them accordingly. So involve patients early and often and pay them and compensate them as the experts that they are.
A lot of people know me as Six Hips on Twitter which is sort of the condensed version of my blog, which is Six Hips and Counting which I can take no credit for. My best friend Jenny who's an English teacher and far more creative than I am came up with that. Hoping to stay at just six hips for a while, but on Instagram I’m Anna_Evangeline. I really put kind of my whole life out there for better or for worse. Always looking to connect with more patients and more projects like this!

Contact Info: Website | Twitter | Instagram

Howard Chang "The Itch to Beat Psoriasis"

"Because there's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them" Howard Chang, Min


Rev. Howard Chang is a psoriasis advocate, a blog writer for Everyday Health called The Itch to Beat Psoriasis. He is a social ambassador for the National Psoriasis Foundation and is also a part of their Advocacy Network in the Western Region.


Howard’s Introduction to Blogging

I started blogging for psoriasis on a site called Health Talk about eleven/twelve years ago and the site just started out with some patients that were blogging. And so I said----You know I was at a point where I was really struggling with my skin disease and had started dealing with it better and thought that it would be a great opportunity to share my experiences living with psoriasis. When I first started there were very few people who were blogging, there wasn't really that much social media at the time.

It really was an unmet need that I saw and I also saw that psoriasis being skin diseases is the kind of condition and people would try to hide from and maybe stay behind doors. They would withdraw socially, so I thought writing was a great way especially as the Internet was developing to get into people's living rooms, to speak to people who were feeling very alone with the condition and really struggling on their own.

Psoriasis & the Lack of Representation of Diverse Populations in the Media

I never really thought about being Chinese or being Asian and having Psoriasis. I just thought I have psoriasis and I want to share my story, but it's true, just in general in the media Asian Americans are not represented especially out here In the West Coast. We're a lot greater in percentage of the population is Asian and we don't really see that represented in the media.

I definitely agree with that, that there are fewer Asians out there and people who are minorities who are advocating. I go to conferences to advocate--with other advocates or psoriasis conferences and there are few Asians. I think it's something that I've become more and more aware of and proud to have been the vanguard or to really get that going and hopefully others will step into the gap as well.

Bridging the Gap with Resources

Online resources are great and there are also groups that may be meeting locally with the National Psoriasis Foundation or other organizations, advocacy organizations, but definitely the foundation is the big one that I and other advocates are part of. Online resources and getting online, there's so many more resources now than there were when I started blogging.

It's really incredible that there are advocates from all different walks of life and backgrounds that you can connect with, that you can talk to, that you can tweet or go on Instagram or Facebook and so forth to make that connection. Sometimes it's not that easy to do it locally or even with their own family.

Getting involved with Policy Advocacy

I volunteered the National Psoriasis Foundation and just recently I got more involved with advocacy and legislative work. Last few years I've gone to Sacramento which starts state capital here in California and we've worked on different health care bills that are primarily related to access to care, prescription cost, benefits things like that.

There's a wealth of new drugs and options for people with psoriasis. Unfortunately people can't afford them or they don't have access to them or they don't know about them and sometimes the legislation and just the way that the health care system which is so complicated that I don’t think anyone can really figure.

But it's inhibiting people from them to be able to get the treatments that they really could use ad needs. I started Sacramento and---just this March I was able to go to Capitol Hill as well, which is an awesome experience. It was the first time that I’ve got to do that, but I've done about four or five state advocacy days as well as the Capitol Hill day of the National Psoriasis Foundation in March.

The Foundation is the largest advocacy group in the world. It represents the eight million people in the states who have psoriasis. They’re based out in Portland but they're really national organization and they have an incredible website and that's a great place to start. Its www.psoriasis.org. It’s very easy to remember and they have pages there for all kinds of things.

There’s a patient navigation center that you can ask questions about anything and there is also an advocacy page and it's a great way to get started to see what are some ways that you can get involved. Getting on a mailing lists, writing your legislators, get involved in some local events, that kind of thing can be found on the website and you can get connected with stuff there or any of the advocates like myself who volunteer with the foundation.

Health Care Legislation, and the Power of the Patient Voice

I used to think that way too, government just seems like a big mess and (questioned) do they really do anything. It’s gridlock, but health care is one of those issues that we can't afford not to speak up about, because it affects our lives and not just our own lives but we need to raise our voices to help others as well. The meetings I've had at the different legislative offices and staff have been really incredible.

You realize that there are people like you, like to me, who have relatives or friends who have different conditions. Many of them we talk to and they say “Oh yeah I know someone with psoriasis” or “I know someone with arthritis” and this affects them too. When you make that that connection, that human connection it does make a difference, they remember you and they'll think of you as the legislation comes out.

Psoriasis, Insurers and Step Therapy

Step therapy is one of the first issues that we dealt with here in California, I think we might be a little ahead of other states in this. But step therapy has to do with insurance making you fail certain medications first, before you can try the one that is prescribed for you by your doctor. They call fail first for that reason. It’s usually cheaper medications, it's not always that maybe the deal the insurance provider has with the Pharmaceutical companies or just their cost structure. But, there's a tendency that you have to go through these other medications first.

The problem with that is if you're starting with something that may not be effective for you or maybe that you've been tried in the past but because you changed insurance providers that you're not going to get better on that. And for some conditions like arthritis you may actually end up starting to lose joints or you may lose health permanently and not be able to get that back. If the doctor says “Yeah you do need to start with step one” then that's great, but it's between you and the doctor and what the doctor thinks, and insurance should not get in the middle that.

Yeah I would love to believe that when I'm in the doctor's office and what we talk about inside is what's going to happen for my health, but unfortunately there are other people in the room. They’re hidden, but there is someone who is holding the purse strings with the insurance provider. There may be a pharmacy benefit management company, they may be others who are having a say in whether decisions are made between the doctor and myself will actually be carried out or not.

I’ll give an example of this just this last year I had one drug that was prescribed to me and insurance provider said they're not going to cover it even though it was a psoriasis drug because I was on another psoriasis drug. The whole point for them was that well there's no literature to say that these two medications will work together.

But, when you have a severe condition like myself you need to be creative and it may not be well studied, the ways the combinations, but the doctor needs to have the full toolkit in order to kind of treat. So that was a completely frustrating conversation with insurance. We petition and appealed multiple times but eventually just gave up and got it straight from the manufacturer.

Another time I wanted a phototherapy light unit, a home unit, which is only a few thousand dollars but again they said no. We went through all the appeals process and I end up buying it out of pocket with the help of friends and family. So there are many times that you have to find a way because it's your health, but you don't always get from insurance the coverage that the doctor would like you to have the medications that you need.

Howard’s Advice to People living with Psoriasis

First off, I want people to know that there are others who are going through that themselves. Before when I was with a different insurance provider I never had and these issues. Maybe just their system that if the doctor prescribed it I got it. When I moved out here and I got into a new insurance system I started having to go through pre-authorization and all these issues that I've never had to go through before.

There are others who are going through it too and patient advocacy groups is one way the foundation that we mentioned The National Psoriasis Foundation, they have staff, they have resources to help deal with insurance issues which is one of the biggest issues that they deal with when they work with patients. There are people who are advocating and people who can speak up for that, who can help them navigate this very complex system on how to get their medication, and how to get the help they need to get better.

Addressing the Complexity of the Issues Within the Healthcare System

When I was in Capitol Hill I was talking to our advocacy staff the National Psoriasis Foundation and what I gather from them is that these issues are so complex and that if you try to change one part of the system that affects another part. They're trying to be as careful as possible to not affect the system in a negative way by getting one thing and maybe hurting another area. Areas that we've been advocating, i.e removing step therapy, capping the cost of prescription drugs especially space them out for the year, etc. getting assistance for those.

Those are kinds of issues that can increase access to care and so that patients receive those with chronic illness who need medication. Patients who are getting more research and better medications but they cost a lot, so they're not able to get them, there's a way for them to get those medications. That said, I think we've come a long way cause I remember the days where if you have a preexisting condition you can forget about getting insurance individually, as a family. But I think that we---the system is still struggling to support those with chronic illness because the costs involved and exchanges struggling with costs as well. I don't know if I have the answer for fixing the problem. Suggestion: Try to understand just from a patient advocate perspective, it's seems way beyond me.

Perspective on the Future of Healthcare and the Patient Voice

I'm hopeful that the patient voice gets out more and more. It seems that in the past the doctors, pharmaceuticals companies, that everyone was impacting the system and getting what they need out of it. The patient was just passively receiving whatever was decided for them. Now that we recognize that the patient voice is so important to legislation in how we craft, message and also in the decision making. In the past it was well the doctor knows it all, he's going to prescribe you what you need and you just take it you do it, that's how I grew up.

Now it's a collaborative environment where there's so much information on the internet, there are so many people that we can talk to collaborate with. We're not doctors. I'm not a medical doctor but I know my condition.I know myself and my health better than anyone and so for me to have a voice in that and then also to just be speaking into these other arenas as well, whether it's legislation or in just how we’re to talk to patients. Sometimes we're talked to in the ways in language that is offensive or it's not sensitive, I think these are all areas that the patient voice can be elevated and have more impact.

The Itch To Beat Psoriasis

My columns on Everyday Health, it's called The Itch To Beat Psoriasis and my primary concern is the emotional and spiritual healing. I write a lot about the emotions of living with chronic illness and living with psoriasis. I also have other areas that I write about like relationships or just all those impacts that a disease can have on you that is more than just treating the disease itself. Sometimes I do talk about the latest treatments and I talk about medications. I usually relate it to just the whole person and that's my goal, that there's a holistic healing for the person. Whether there's a cure or that disease goes away or not that we can live a full active life as we would desire to. I think mental health and quality of life are issues that we're talking more and more about because we're not just treating a physical condition, but that physical condition. It's almost like a war that we're fighting and that it never ends.

It’s a day after day battle and so that kind of battle wears on you. It can be frustrating, people with psoriasis deal with chronic itch times, deal with treatments aren't working as well and so that wears on you. There is the fear the unknown. It's an autoimmune condition, inflammation can flare up at any time. All these have been shown to produce depression and anxiety even suicidal ideation and so forth. Some things I do for myself to kind of keep calm or to help with my anxiety is pray. I'm a pastor and so I really believe in kind of that quiet time, to pray and to gain perspective.

Effective Mechanisms to Cope with Psoriasis

If my body is not doing well, if my outer world not doing well, I can do something about my inner world and I could find refuge there. I kind of go deeper within. The worst my condition is, the worst my health is, the deeper I go inside. I like to do other things like exercise, I run three or four times a week and I'm very grateful I don't have arthritis like some of my fellow advocates. I get out there and exercise and play with my kids. I have hobbies, I just started to ground coffee and make espresso. Just little things that kind of keep my mind off work and off of my health that kind of thing. I have a dog to take him out for a walk. Take a bath and just use some oils that will help with my skin and relax me.

Just all kinds of ways that I learn how to cope with it. There are times where I've had to go see a counselor or to talk to a friend just about it. Sometimes I don't want to talk because it's “that again”. I don't want to bother people again because it's--but I still have a chronic condition and so I may be chronically talking to you to get support and to share about it. Having people like my wife---she doesn’t know exactly what it's like to have Psoriasis but she's very empathetic and she's a great listener.

The Role of a Supportive Social Circle

Having support, church network is supportive, they ask me “How's your skin doing?” Sometimes it takes me off guard that people are checking in. It doesn't help me if someone says “Oh I know what it's like, you know I've had this rash you know or had poison ivy or something”. I said well it's not quite the same but just to be able to say “You know what you going through must be it's really difficult and challenging” or “Is there some way I can help out?” These kind of things help when we're feeling overwhelmed. Those are things that help, that help me when I'm struggling through it.

A Call for More Patient Voices on Social Media

It's been great to see more and more people getting involved in blogging and social media and spreading the word and I think that we need even more people. If you've been helped or if you've been supported by those who have gone before who have spoken up, put themselves out there and you feel like you can do that even just a little bit, even if it's not online but just locally. Getting involved in some way it makes a difference. One person makes a difference.

I started out wanting to help one person and I found out that I did help one person when I helped others and that was me. There are so many different ways that when we help others we gain, so get out there and get involved and help that one person out. Check out my blog at Everyday Health, it’s called The Itch To Beat Psoriasis. I also have my own website called psohoward.com, my Twitter is @HChnag316 at and I also have The Itch To Beat Psoriasis page on Facebook.