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.


David Watson, MD | Amplifying Safety Cultures in Healthcare Systems

"The idea of what is called a just culture and what that means is that we adopt the ability as an organization to look at things that happen as learning opportunities rather than opportunities to punish" David Watson, MD.


David Watson, MD is a physician surveyor for The Joint Commission. Dr. Watson work for The Joint Commission serving hospitals for accreditation one week every month.

 

About The Joint Commission

The Joint Commission is the accrediting body that goes around every three years and looks at hospitals to make sure that they meet certain standards of care and that they are able to demonstrate those as we walk through the facility. As we look at the way they take care of infection, the way that they prepare food, the way that they write orders and things in the chart. We then have an engineer check out the engineering of the facility.

The standards all started many many years ago back at the turn of the last century when the American College of Surgeons decided that hospitals needed to have quality done in the same way at each hospital. That is how The Joint Commission started. It eventually became a collaboration of several organizations in about 1960 with the hope that we could give the same quality of care to all patients who received it in the United States.

Safety & Quality in Healthcare

Well safety is the foundation of good health care. Right now The Joint Commission has adopted a new motto and that is “Zero Harm”. Our goal is to work towards that and all the safety measures help us reinforce those things. For a long time we thought that we couldn't adapt things that they do in industry, but we found that those high reliable processes work very well in medicine eliminating things that are infections on a recurring basis.

We know if we take certain steps we can prevent those and just looking at safety overall. Making sure that the sterilization process in the operating room is done properly so that they go through those steps. That scopes are used for doing endoscopy those are cleaned properly. Those are all safety things that are very important and we've heard the stories where they are not carried out properly.

The Las Vegas endoscopy clinic for example with all the problems that they had there. Someone needs to be making sure that happens.We are one of the many bodies but the largest by far of the hospitals that we survey and take care of and I really enjoy being part of that process.

Thoughts On Hospital Systems That Prepare For The Joint Commission's Visit

It’s one of the things that I always say to hospitals when I survey. The words I don't want to hear is “we prepared for the joint commission”. We’re here to look at you at a point in time and hopefully that allows us to come as just be another set of eyes and have the opportunity to look at what you're doing. If you don't meet the standard we're going to explain why and give you some options to help you.

If you exceed it, and have some really great things, I'm going to look for those too because I want to take those back. I have this philosophy about medicine that are no good secrets in medicine, people need to share the good stuff. This is not like inventions. These are things that have to do with the wellbeing of all mankind, so we should share them.

Collective Mindfulness; Going Beyond Policy To Ensure Safety, & Quality As It Relates To Healthcare Workers Experience.

Policies are crafted to make sure that we have coordinated consistent way of doing things. They are the framework by which we can have all employees do the same things for the same purpose. That's one of the things we look for in The Joint Commission. When there are things that we look at that we are concerned about we want to make sure that what the organization does agrees with the policy that they read. And, it's a very intricate part of the everyday survey.

There is a concept out there as far as safety goes and the concept basically is called collective mindfulness which means that every person in the hospital is a safety officer. Therefore, if you're walking down the hall and you see something on a tile that doesn't look right, you pick up the phone and you call the people in maintenance and say “Hey the tile outside of room 247 isn’t staying, maybe something is going on”, or a stain there may be some of them. I can take a look at it if things are dirty, if something is broken or something is outdated.

It's everybody's responsibility to take measures to make sure that that's corrected. One of the other things that I like to see is, I used to do interventional blocks. I like to see the count in the operating room tagged in such a way that not only do I know that it was inspected but I know that it was inspected within the last year. I don't just look for the number but a color code that says, when I pick that gown up and put it on to protect myself from the radiation. I know that it was checked and I know that I'm doing it not because there's a policy that says I should do it but also because I know it's going to protect me.

Just Culture | Balancing Accountability In A Non Punitive Way To Reduce System Errors, Ultimately Improving Patient Safety

It's an idea of what is called a just culture and what that means is that we adopt the ability as an organization to look at things that happen as learning opportunities rather than opportunities to punish. We are open to look at those things that don't go right to figure out why they don't go right.

As I said a little bit in my talk (#PESummit), I pointed out that even when these adverse events happen 85% of the time they don't involve a medical error and even when a medical error happens over 90% of that time it has to do with the system. That the system has not organized itself in a way to prevent people from being put in that position. That pretty much sums up why we need to look at this overall structure and say “hey these are opportunities to learn not to punish”.

Real Life Example:

While on orientation (day 3) a nursing assistant was instructed by an nurse to place a hot pack on a patient’s pelvis area. The hot pack became open at some point and hot fluid from within rushed onto the patient’s skin causing burning to the scrotum. The nursing assistant was immediately told to leave the facility after the accident.  

OK, this happened but why did it happen? Did that person do it intentionally? I don't think so okay. Was she trained properly? No. Is it a systems issue? Absolutely. That goes right down to leadership, it goes back to immediate supervisor. It goes back to one of the things that we look at, always look at competency for people to see if they've been trained.

If they've checked off on that every year and if they still have that competency level. She probably hadn't even been given the ability to have the competency to begin with. Ultimately the responsibility for what happened here lies with leadership and that's the way I would look at it. That's the way it would look if I were doing a survey.

Applying Emotional Intelligence in the Medicine

Well it's that balance between what you feel and what you know. If you can apply that in the sense that it gives you that feeling of what you're doing is right, for me it would be almost like that second voice of reassurance that you're on the right track.

Thoughts On The Future Of Healthcare When Coupled With Technological Advancements  

I think there are great opportunities out there for the use of the advancements in technology. We’ve seen so many things come. I was blessed to start in anesthesia back in the 1970’s where everything was manual. I pumped up the blood pressure cuff, I listened to the heart, I felt the patient's pulse, I looked in a patient's eyes. This is all done by machines now and that microchip has come a long way.

Other things that are coming in the future I think would even be far more changing. We have the capability now of putting up a little dot like a band-aid on your wrist and it can read your pulse, your temperature. It can even by impedance tell what your blood pressure is. Now a nurse 50 miles away and she has a computer is able to Skype. She can take that information, look at you on there and to say whether she needs to come out to your house today or not. This will allow healthcare to become more efficient and hopefully less costly.

Maintaining Enthusiasm In The Medical Field

I think the excitement for me is the possibility of leaving medicine better than I found it. I started medicine in the 70’s when things were rather crude compared to what today is. Along the way I've learned lots of things and hopefully I can share those with others in their journey to make medicine better. It's always that pursuit of excellence. That wanting to reach a little bit higher, to do it a little bit better and always with the goal in mind that we're taking care of patients and we never want to harm them.

Embodying Empathetic Cultures In Healthcare Systems


I think the empathy for me and the important part of this conference (#PESummit) is what I talked about earlier, that 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.

Closing Remarks

This has been a fabulous opportunity to meet with other people who are concerned about the welfare of patients and about the welfare of their fellow healthcare workers. An aspect that isn't often overlooked. We take great care of patients but we don't always take the best care of ourselves.


The Joint CommissionWebsite | Twitter

Elevating Interactions in Healthcare, By Jason A. Wolf, Ph.D., CPXP

"Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience" Jason A. Wolf, Ph.D.. 

 


Jason A. Wolf, Ph.D. is a passionate champion for positive patient experience #patientexperience #PtExp, organizational culture & high performance #healthcare. Dr. Wolf is the President of The Beryl Institute and founding editor of the Patient Experience Journal

The Beryl Institute

We’re a global community of practice on creating improvement on the patient experience through shared knowledge and collaboration. We have really built a global community of individuals across segments of the healthcare practice to engage in discussions on what it means to improve the healthcare environment for those both receiving and delivering care. We’ve done it through the building of educational materials resources such as thought leadership, webinars, to white paper, research and elsewhere. Also in bringing people together just in communication and networking to learn from and share with one another.

Defining Patient Experience As Outlined by The Beryl Institute  

The sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.

Those four aspects of the definition, the idea that its based on interactions. That it’s grounded on all touch points across the continuum and also in the spaces in-between. That it is ultimately the perceptions that patients, families, and their support network that are the indicators of success in experience and are all critical elements.

While it is a simple phrase, there's a great deal of complexity involved. It does bring us back the fact that in healthcare we’re in a business of humans being caring for humans beings. Therefore, if we can't get the interaction part right i.e personal interaction or clinical interaction we can really never deliver on experience promised in the kind of organizations that we build.

What we mean by culture are the means by which we deliver all those interactions. We have to get all those elements right. Its not simply just getting our checklists right or our clinical protocols correct. It's really about building a systemic solution that drives lasting, sustained outcomes and positive experience for everyone involved in the healthcare encounter.

Discussing Barriers That Hinders Achieving Patient Centered Care

The barriers to experience excellence are interesting. We can go with what the data says, which people always say that it's time, leadership isn't focused, there’s too many priorities etc. I really think that probably the biggest barrier right now is that people are still trying to get their arms around what it is. All too often we have tried to over apply tactics to what really is a systemic issue. I believe that probably one of the bigger barriers to truly providing the most positive experience, the idea of engaging people from patients and families to having patient centric principles to thinking about patient activation---all the terminologies that we use.

We’ve separated all these pieces and instead not really thinking about the systemic solution that as a human being in healthcare delivering care to human beings what is that experience we believe people deserve. Stepping back and thinking about the broader conversation of what experience can be is one of the greatest means by which we can actually overcome that barrier. I do think we get stuck in the mechanisms of healthcare all too often. Thinking about the system that we create to deliver on process and not really thought about the broader strategic impact that we hope to have. That does get in the way of our capacity to ultimately provide the best experience.

Thoughts On Technology & Its Capabilities In Improving Care Quality, Patient Safety, Patient Education, Diagnostic, Clinician Collaboration etc.

Technology is the key lever, it's one of the strategic filters of experience. In a number of ways is the means by which we now communicate with people. It's the means by which we now share information. It's the means by which we can create more efficient and expedient processes.

We would be remiss if we didn't understand that there's a technology aspect to providing better experience and better outcomes but it's not technology for technology sake. When we begin to think about building an experience that really impacts people, its the core ideas of the definition. It is then the resources that you can put in place to ensure the best in experience.

If we realize that technology is a tool in our tool bag in terms of ensuring that we can elevate experience and we use it in that way with the right strategic lens, I think it does have a significant impact. The application of technology for technology’s sake I think we’ve seen that not necessarily work to our advantage and sometimes it can even become a burden on people’s capacity to provide experience really well.

Framing The Future of Healthcare; The Importance Of Shifting Organizational Culture To Improve Patients Perception Of Care

Where healthcare is going is to this idea of a commitment to the human experience of balancing the patient and family outcomes with ensuring a good caregiver provider experience. Creating healthy folks in delivering care, ultimately ensures better outcomes for those that healthcare delivers care for. However, they have to do that in partnership.

The ability to engage in where healthcare is going, is going to be centered on this idea of partnership, co-design and co- production, engaging all voices. And, not only the creation of solutions but in the next steps forward in terms of designing what healthcare can and should be. Healthcare has got to challenge itself a bit.

I would even be so bold to say, the word and the phrase patient centric is actually a provider centric language. We are saying that we believe from healthcare that patients should be at the center of care. I had a very wise patient say to me when I was speaking in Australia, “nobody asked me if I wanted to be in the center. Do we really always want to be there?” Not to simmer from that, I think that the evolution that we’ve heard in healthcare--from doing to patients to doing for patients, to doing with patients.

We can’t see everything as linear in that way. In fact, there are moments where I think as patients and family members we know things are going to be done to us or for us, not always with us. We have to find that ability to balance between those things and create the right kind of conversations that we are able to co-create the future of healthcare.

The Role Of The Beryl Institute In Setting The Stage For Improving The Patient Experience.

The role that The Beryl Institute has is to serve as a neutral ground for this conversation. To push the boundaries of the discussion, to help elevate the thinking and create a safe space for people to share the greatest ideas and really almost circle around failures and find means for improvement. My hope is that we continue to push the experience story, not as a nice thing that healthcare has to do. We’ve always said that we believe if you think about healthcare from an integrated perspective, if you think about experience from an integrated perspective, then it is about quality, safety, service, cost, access etc.

For us it really is about continuing to elevate the integrated perspective, that all that we do in healthcare ultimately contributes to the experience people have. That in fact whether we plan for it or not people are having an experience in healthcare today.It really calls on healthcare leaders to realize that they can create that experience or just leave it to chance.

So, for us to instill a sense of strategic imperative that this isn't about satisfaction, it's not about making people happy, but its about driving the outcomes that we believe healthcare is capable of. That the people that are experiencing healthcare deserve. That will continue to be our rally and cry. That's the opportunity we have and it's the conversation we need to stay in together in terms of driving the right outcomes for healthcare today and well into the future.

Defining Empathy In The Patient Experience

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. We do actually amplify empathy, we do elevate the delivery of compassion by moving beyond the words to the actions. Ensuring that we engage people in those ways, that they feel as if their experiencing the things that matter to them not words that we think equate to that.

Closing Remarks

It's important that people know that The Beryl Institute is a name. We’ve been very clear that it's not and has never been about The Beryl Institute, or Jason A. Wolf, Ph.D., CPXP its about the conversation and the community that we bring together. To be able to participate in a way that we think is changing healthcare. We’re a community of practice, our job is to catalyze and get out of the way and ensure that conversations like this can thrive. Anybody that's thinking about contributing to this kind of dialogue and elevating their own contribution to healthcare that needs to happen.



Jason A Wolf, Ph.D., Website | Twitter 

The Beryl Institute Website@berylinstitute 

Patient Experience Journal Website@pxjournal

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.