Recapping #PESummit | Empathy + Innovation

"Empathy is something that's essential to us being human beings. The idea to look at our fellow men and women and see pain, happiness or suffering and feel that your self" Evan Peskin, Resident Physician, Conference Attendee.

 

Cleveland Clinic Patient Experience Summit 2018

Empathy + Innovation

EMPATHY

WHERE } YOU } ARE

A two day conference held during June 18-20 in Cleveland, OH

In attendance were stakeholders at all levels across the healthcare space including patients, clinicians, and decision makers. To gain perspectives on empathy through different lenses I spoke with the Cleveland Clinic staff, healthcare leaders, decision makers, and healthcare enthusiasts in regards to defining patient experience #PtExp. As well as predictions and future outlook for technology and humanism in healthcare.

Jessica Crow, MBA Program Manager IV, Center for Excellence in Healthcare Communication

Incorporating Patient Centrism  at the Center for Excellence in Healthcare Communications at the Cleveland Clinic

We focus on communication, empathy and just seeing people as people. Having real conversations, getting to know who they are, understanding their needs, what’s important to them, their families, their backgrounds. So that you can truly figure out how to care for the entire person.

Barriers Hindering Excellent in Patient Experience

Time! Time, is always an issue within communication and medicine. Whatever we do, the feedback we always hear is “well I don't have any time. I don't have time for that. I have to see more patients, or I don't have time to go to a class etc.”. I think that if we were to use some of the skills that we try to have people focus on, it actually saves you time. Time is always a barrier. Productivity; there's always an ask to do more and more with less and less, faster. We’re constantly trying to compete with that. What gets lost at times is that connection, seeing people as people, it then gets very robotic, monotonous, emotionless and cold.

Empathy

When I hear it, what I think of is, somebody hearing me, somebody understanding what I’m going through, somebody almost feeling what I’m feeling and being able to recognize that for me. Not about themselves, not about anything else, but really thinking about what I'm going through at that time and how that must feel. When you get that genuine response in that moment, and feel like their actually listening to me, they actually understand how I’m feeling and that they care.

 

Joaquin Dos Reis, Program Manager, Global Education, Cleveland Clinic

Caring the Cleveland Clinic Way

I care about education, sharing information, I care about others, I care about our patients, our colleagues, caregivers, staff, everyone!

Empathy at the Global Education Department.

Empathy means everything. If you are a Cleveland Clinic caregiver, from the first time you park your car, you are in the Cleveland Clinic, you are a Cleveland Clinic caregiver. Part of that is that we have the opportunity to work with patients and work with colleagues and physicians from all over the world. We connect the dots, we bring international physicians to the Cleveland Clinic to meet our physicians and leaders.

 

Julie Rish, Ph.D., A Clinical Psychologist, Director of Design and Best Practice in the Office of Patient Experience | Director of Communication Skills Training and an Assistant Professor of Medicine at the Cleveland Clinic

Humanism in Medicine

I think that 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. 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.

Barriers in Healthcare Delivery

There’s a lot of barriers that equal time and task pressure. How can I be present in this moment and not be 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.

Watch/Read The Entire Discussion

 

Richard I. Levin, MD, FACP, FACC, FAHA, President and CEO of the Arnold P. Gold Foundation, a position he’s held since 2012.

Thoughts on Technology & Healthcare

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.

Read/Watch The Entire Discussion

 

Michael Joseph, PMP is a chronic illness patient from Northern Virginia, currently the founder and C.E.O. of Prime Dimensions and Executive Director of Empathy. Health.

What I can do overall to contribute to the patient journey, patient’s experiences is that's the impetus for empathy.health, part of that was influenced by what's going on here at the conference, Patient Experience Conference with Dr Adrienne Boissy, MD, MA who has been preaching this for quite some time long before empathy.Health came along.

Curating content from that site into ours would be great. In addition to other industry leaders and folks on Twitter that have really contributed dialogue as well. There’s Empathy Princess on Twitter, Merriman. There’s so many people on Twitter even today, the whole #pinksocks movement and tweet chats (#HCLDR) about this. It's a great platform for people to voice their opinions, their frustrations and best practices. Maybe, we can grab some of that and put that collectively on Empathy.Health as a resource.

Watch/Read the Entire Discussion

 

David Watson, MD. A physician surveyor for The Joint Commission

Healthcare Workers & Empathy

I think the empathy for me and the important part of this conference (#PESummit) is what I talked about earlier, thats second victim. These are healthcare workers that are involved in an adverse event. The empathy that needs to be expressed to them is that connection of realizing that they've been in a difficult situation and they need to be supported.

They need to be reassured and they need to know that they went into medicine for the right reasons. They take care of patients because they love what they do and they should continue to have that fire in their eye when they go to work every day to be totally engaged. We know that total engagement leads to less errors so we want our workforce to be engaged.

Watch/Read The Entire Discussion

 

Jason A Wolf, Ph.D. CPXP. Dr. Wolf is the President of The Beryl Institute

Patient Experience & Empathy

We did a research on empathy, compassion, all these kind of things. We asked consumers, to what extent empathy and compassion was important to them. I was actually surprise, it came down the list. I think it's because, empathy is a healthcare centric language. A typical patient and family member out there knows what they want to see. They want to feel listened to, they want to feel like they are being spoken to in a way they understand etc. Those were the things they elevated in terms of importance. For me the lens is not to get stuck in what empathy is but to think about what does it look like in action.

I’m probably less concerned about how we define empathy. How we elevate empathy and the actions that we take to ensure that patients, family members and those that are delivering care feel heard, are communicated to effectively, are engaged in ways that matters to them, then they feel what we believe empathy is. All of those things without having to put a label on it in a way that is about us doing something but more so about engaging the folks in care themselves.

Watch/Read The Entire Discussion

 

Claire Pfarr, Marketing Manager, Oneview

Thoughts on Patient Experience

Patient experience is one of those things I have found where no matter who you are, what walk of life you come from, when you’re speaking to people they all have a patient story. Everybody have a patient story. Whether they were a patient, or whether they were caring for a patient, everybody has healthcare experience that most often that's most often not necessarily a good one. I think that is very telling, but I think that healthcare has the opportunity to really take care of these people and to turn a negative situation into a very positive one.

 

Evan Peskin, Resident Physician | #PESummit Attendee

Thoughts on Empathy in Healthcare

Empathy is something that's essential to us being human beings. The idea to look at our fellow men and women and see pain, happiness or suffering and feel that your self. To be able to truly feel what someone else is going through. It's different from sympathy, it's not just feeling bad for someone else for what their going through. Empathy is truly experiencing or attempting to experience what the other person is going through.

Improving the Patient Experience

We improve the patient experience (as much as it's a cliche) by recognizing that everyone is a patient at one time or another. Even if you’re not the patient sitting in the hospital bed, you’re the family member standing next to your love one there. You improve the patient experience by taking the physician off the pedestal. Physicians should not be autonomous decision makers anymore without any input from patients and family members.

 

Kelsey Crowe, Ph.D | Founder of Help Each Other Out

Dr. Crowe, a plenary speaker at the #PESummit used real life examples of empathy in healthcare that were collected at the Help Each Other Out Empathy Bootcamp  

Empathy Examples

  • It really made a difference when my nurse: stood by my side and made physical contact with me during my biopsy. It was so comforting and reduced my anxiety. Thank you!

  • A UCSF staff person (receptionist, security guard, health aid) made me feel better when: let me lie down on the couch to rest and even dimmed the lights for me.

  • Something my doctor did or said that really comforted me: Gave me a hug.

Dr. Crowe then stated These are often recalled years later.

  • The receptionist/scheduler has been so helpful when: She moved another appointment by 10 minutes so that I could have my very first appointment after diagnosis with the surgeon, without having to wait 3 weeks.

"I can't tell you how often people describe this kind of behavior by schedulers and receptionist" Kelsey Crowe, Ph.D

Read/Watch More on Empathy & Healthcare

 

Social Media Activities & #PESummit 

During the summit Colin Hung posed a crucial question, challenging the glory of patient experience to the #HCLDR tweet-chat community “Have We Reached Peak Patient Experience?”. Read more on Hubberts Peak Theory, Colin's rationale and thoughts on patient experience via the  Healthcare Leadership Blog


For More On The Cleveland Clinic Patient Experience Summit 2018 Check-out

#PESummit | Website

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.


Lilly Stairs | Patients Have Power!

"There are studies that show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this" Lilly Stairs.


Lilly Stairs is the head of Patient Advocacy at Clara Health. A company working to connect patient’s clinical trials and also a patient living with psoriatic arthritis diagnosed at age seven and crohn's disease. 

 

Psoriasis Diagnosis at Age Seven

First of all at the age of seven I was actually diagnosed with psoriasis. Mine was gutty so it looked like chicken pox all over my body. I was never told that it was an autoimmune disease. I was also never told that 30% of people that were diagnosis psoriasis will actually get psoriatic arthritis. So fast forward many years to when I turned nineteen I was actually just over the course of the summer and I started to develop this underlying pain.
Then one day I woke up and I literally just couldn’t even move. I was to the point where my mom had to dress me, she had to feed me and my whole body was paralyzed with pain. It was at that point that I was diagnosed with psoriatic arthritis.When I say pain I mean I was put on a whole slew of narcotics and none of them did anything to help. At the age of nineteen, two autoimmune diseases weren’t enough, so we had to add a third and I was diagnosed with crohn's disease six months after psoriatic arthritis diagnosis.
That actually happened after I was in and out of the ER three times in one weekend. The doctors at the ER unfortunately didn't believe I was dealing with pain. I would try to swallow water, I was in agonizing pain just trying to swallow water. It was absolutely awful. They thought that I was just trying to get access to pain meds. Finally the third time I went to the E.R. I was finally admitted, I was in the hospital for a week, they ran a series of tests. Finally they did a capsule endoscopy and that's when they found bleeding ulcers in my small intestine and I was diagnosed with crohn's disease.

Women, Autoimmune Disease and Pain

About 75% of the patients who are living with autoimmune diseases are actually women. There are studies that show that women are unfortunately not always believed by physicians that they are in pain. They are put in the situation where they need to prove their pain, there are countless studies on this. This has happened for so many patients living with autoimmune disease and it’s something that really happen to me as well. I had gone into the ER three times in this agonizing pain, pain I had unlike anything I ever experienced and they didn't believe me.
They thought I just wanted morphine, that I was trying to get access to drugs or that it was all in my head. Here I was this very happy otherwise healthy 19 year old who wanted to be back in school, wanted to be back in college, didn't want to be in the hospital bed but here it was. I was afraid because nobody believed me and I didn’t know that I was going to get the treatment I needed. So we need to see a change of mindset, a shift in mindset in some of these physicians---out of the idea that----acknowledging these biases that the health care system has against women.

Access, Insurers and Healthcare

I have been incredibly fortunate when it comes to access in my experience as a patient. I have had insurance throughout the entire time and they’ve or actually been really wonderful about covering the medicines that my doctors prescribe. This is refreshing, because with the work I do oftentimes I hear about how patients do not get access to the medicine their physician wants them to be on. Right now we have insurers playing doctors and saying “Well I know your physician wants you on this medicine but we’ve cut a deal with this person and so we need to give you this medication first or you have to go through step therapy before you can get to the medication that you need”. So I have been fortunate, in that every single medicine my physician has prescribed I’ve been able to get access to it.

 

Defining Step Therapy; From the Perspective of A patient living with Autoimmune Disease.

Step therapy is when you are forced--- this happens a lot to autoimmune disease patients.  When you are forced to go through a series of medications before you can get to the one that your physician wants you to be on. So it makes you try something and some of these medications maybe they're less expensive, maybe they are less potent than some of the other medications. But they are making you go through it because the insurance company wants to make sure that they're not spending extra money.
What I will tell you is that unfortunately, with many autoimmune disease patients their disease progresses because they don't get access to the right medication. For example, let's say I'm a patient who’s just been diagnosed with crohn's disease and my doctor wants to put me on what's called a biologic, but they're not going to let me go on the biologic.
My disease is very severe but the insurance company says “No she has to try this drug, and this drug before she can get access to that biologic”, the biological that my doctor wants me to be on. During the time that I have to try X, try and fail X. Y. and Z, go through these steps, my disease progresses, and some people’s diseases progress so much that they need surgery. In the end has the insurance company saved any money? No because now they have to pay for surgery.

Therefore, step therapy is bananas to me, it doesn't make any sense. Its intended to save money and it's not. So we need to re-evaluate what that looks like, maybe that's worked for other diseases in the past but with these complex chronic illnesses it's not OK. Medical switching is when insurers are playing doctor. So let's say my doctor wants me on a medication ---- you have biologics which are these entire class of medications. They tend to treat patients with autoimmune diseases. Insurance companies view them as being all in one class and therefore they're all the same, so they're interchangeable.

The problem is that if my doctor wants me on a drug that have a specific target---i.e they all have different mechanisms of action everybody biologic. If my doctor wants me on a drug IL12 and 26 the Interleukin 12 and 26 that specific mechanism of action. Sometimes the insurance company could turn around and say “No we want to put her on a different biologic that's an anti TNF inhibitor”, but anti TNF inhibitor don’t work for me. So they're just saying “Oh they're all biologics, they’re all in the same class its fine. This is our preferred drug she needs to be on so that”. Then the insurance company comes back and they literally change the prescription that the doctor prescribed to the patient. That’s how the insurance company is getting involved in the decision between the doctor and the patient.

The need for change in step therapy practices.

How is this legal? It’s a great question. I don't know! I actually sat on a commission in Massachusetts this past year where we did some research on how dangerous this practice can be. How it actually costs the Commonwealth. The report hasn’t been release yet but I’m hoping it's going to be released soon. I am also hoping that there is going to be a bill that is put into place to prevent this from happening. We’re just starting to see non-medical switching bills come out. They are detrimental to patients truly and It’s difficult.

 

Dealing with Stigma while Living with Chronic Illnesses

It is so difficult to live with chronic illnesses when you are a child, teen, young adult into adulthood. At the time (during childhood) I remember when I was that and had the psoriasis I was so afraid for other people to see it at school because I didn't want them to think they were going to get it or that it was contagious. I always felt very uncomfortable wearing like a T-shirt, it was embarrassing for me. Then here I am at age 19 with arthritis. You think only old people get arthritis or that's the mentality that we have in society, when in reality they're actually so many young people who are living with arthritis. It kind of gives you a complex right.
Then you have to deal with “OK now dating is in the picture and how do I talk to somebody about the fact that I have these chronic illnesses and are they going to, or will anybody ever love me”. These are the things that run through your head when you’re first diagnosed, that's why I think it's so important that we have advocates out there. We have some amazing chronic illness advocates in the community who talk about what it’s to live with chronic illness and give other people hope that it's going to be okay.

Switching into the Role of a Patient Advocate

I’ve always been a person who is for the underdog and I think it's been a part of my nature. From the time that I was in the hospital bed---- let's say I was in the hospital bed for crohn's disease this was my third autoimmune diagnosis. Keep in mind, I had never heard the word autoimmune before. I’ve never heard the word autoimmune and I was now living with three diagnosis.
How is that possible? There are 50 million Americans who are living with an autoimmune disease. For a point of reference that's about twice as many as cancer and we all know somebody living with cancer right. There’s twice as many people with autoimmune diseases but we’re not talking about them. I remember being in that hospital bed and saying “This isn't right. This is something that I'm living with and I had no idea I never even heard about it before”. I felt compelled from that moment in time if this was my reason for being.
This is something that I needed to do help others. And so from that moment I actually left the hospital---actually while I was in the hospital I kind of started cooking up ideas for ways that I could help start to raise awareness. Then began the journey through the healing process, through my journey into remission. I spent time I got on Twitter and I started talking to fellow advocates, I said “I want to blog about my experiences. I want other young women and young people who are diagnosed of these diseases to know it’s going to be okay”. I just I knew from the moment I was in the hospital bed that it was really my calling that I needed to help others.

Visible and Invisible Illnesses

It’s hard to say advantages and disadvantage when it comes to physical versus invisible. And it's interesting because I've had conversations with other patients who have a physical disability. We’ve talked about the fact that, OK I have a physical disability somebody has a physical disability that so people automatically understand right. They maybe have empathy for you right away. But also people with physical disabilities get frustrated because they don't want people to now treat them differently necessarily. This woman was telling me once she says “People will like talk to me like I'm a baby, and I'm OK. I'm in a wheelchair but I'm fine”. There is an automatic empathy there. Invisible illness, it’s tough. People don't get it, they don't understand that when I am standing there and I look OK and I put makeup on the morning I might be exhausted. I might be to the point where I can barely talk I’m so tired. I can barely take a shower I’m so tired. But nobody can see that and they think I look fine so they think everything is okay.
I'll never forget I was on the MBTA, the local Boston public transit and I was coming back from work and I was in so much pain, my arthritis was flaring, I was sitting and an older woman got on to the train. People were looking at me like I should stand up to give her my seat, I was like “These people probably don't even know I am in worse condition than this older elderly lady standing here”. But, nobody saw that people just see what they think is a healthy 19 year old. In terms of society these preconceived notions and assumptions that people have about diseases can be really frustrating.
When people had found out that I have crohn's disease they’re like “Oh isn’t that a disease where you run to the bathroom a lot” I’m like “No, that’s not actually what my experience has been”. I actually have bleeding ulcers in my small intestine and that was the only symptom I presented with. Now that wasn’t a great symptom to be living with but that's a very different experience. Then when people say “Oh I thought only old people get arthritis”. Okay a little bit joke “you’re like an old lady” and it's OK, you get used to it but it can be a little frustrating.

Addressing Societal Stigma

Try to be open and understanding that all these diseases present very differently for each person and being respectful of what somebody is going through. Also, not jumping to the conclusion that like just because I look OK means that I am capable of doing everything that somebody else is doing. Sometimes I’m going to be so exhausted I can't go out to dinner because I physically don't even want to hold myself up, I just want to lie down and sleep.

Desires for the future of healthcare

If I had a magic wand! Oh god do we have 24 hours for me to just talk and tell you all the things I want fixed. I will tell you one of the most devastating things I have seen and thank God it hasn't happened to me. But one of the worst things I have seen from my work at Clara and my work with patients and advocates is the financial devastation that chronic illness can put on patients and families. I have watched and heard the stories of patients who they have jobs, they are contributing members of society, they have families and all of a sudden they are diagnosed with chronic illness in their insurance doesn’t cover the medicine they need you know they have so many medical bills that they just can't afford to keep up and they go bankrupt.
They lose everything and they were doing everything right. Although, they had jobs they were contributing to society, they lost it all. That is not fair. Because they were dealt this, they got this disease, they didn't ask for this disease. They didn’t asked to be diagnosed with a chronic illness, they didn’t do anything to prompt them to be diagnosed with a chronic illness. But here they are and this is the hand they've been dealt. They are not being supported by our current system as it stands and I have a huge problem with that.

Finding & Facilitating Patient Empowerment and Advocacy at Clara Health

I knew I wanted to dedicate both my personal and professional life to patient advocacy from the time I was in the hospital bed. I discovered through some of the work that I had done in healthcare already that the patient voice was missing in a lot of what we were doing. It's really interesting because I think the biotech industry has actually done a decent job bringing the piece of patients of patient voice in over the past ten or so years, but we're not seeing that on some of the health tech and digital side of things. So, it was really exciting when Clara Health brought me on as their head of patient advocacy and one of the founding members of the team.
It was refreshing to see that they wanted the patient voice in there from the beginning and so through this I have had the opportunity to both champion the patient voce internally and externally. What is most important to me is that we are doing is that is that we are empowering patients with the knowledge that they have the power in their healthcare journey. They own it, they make their treatment decisions, they decide how their care is managed. It is up to you, it's up to you to own that and to feel empowered to own that.
I think they lack that just because when we talk about this, i.e the societal constructs that are in place when you look at the doctor patient relationship. Patients need to know that this is my body, this is my choice what I do with it and I have every right to seek a second opinion. I have every right to challenge this diagnosis. I have every right to challenge the treatment options. That’s really important and so for me to have the platform to be able to do that with Clara Health has been amazing. To work on the Patients Have Power Campaign and empower other patients with this knowledge I couldn't ask for a better job.

Patients Have Power!

Patients have Power means to me that patient’s own their journey. It means all of those advocates that I have the opportunity to work with every day. I work with so many patients who inspire me to be more empowered in my healthcare journey, who are inspiring others every day to be empowered in their health care journey. We as a community are powerful. We collectively as patients have power and that’s what it means to me.

Contact info

Lilly Stairs: Website | Twitter | Instagram  

Clara Health: Website | Twitter | Instagram 

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!

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