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



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.


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, 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

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

Danya Glabau, PhD "The Moral Life of Epinephrine in the United States”.

"Modern medicine has made great strides by trying to standardize diagnosis and treatments but because of the way we manage physician-patient encounters, there's often not a chance to step back and say could I be asking other questions, might there be some other family, social and cultural factors that is potentially affecting how these roles can be applied in these individual cases" Danya Glabau, PhD.

Dr. Danya Glabau is a Medical Anthropologist, Founder of Implosion Labs, LLC, an ethnographic research and consulting group working with clients in health care and technology, and Adjunct Instructor in the Technology, Culture, and Society department at NYU Tandon School of Engineering. She is the Co-Chair of the Science, Technology, and Medicine special interest group of the Society for Medical Anthropology and Co-Organizer of the New York-based QX MeetUp Group

“The Moral Life of Epinephrine in the United States"

This was an article that initiated some other work around patient advocacy, and healthcare for food allergies patients. This piece was looking at epinephrine auto-injectors, specifically which are these devices, a drug device combination that administers a dose of epinephrine for a person who is experiencing an allergic reaction. You might have one of these prescribed if you have a food allergies and potentially if you have an allergy to certain drugs. The way it works is it’s kind of a spring loaded mechanism about the size of a sharpie marker and if are experiencing an allergic reaction you can surge a bit into your leg, it will release medication epinephrine which we also known as adrenaline that very rapidly reduces the symptoms of the allergic reaction.

What I found when I set out to do my research was that I would sit down to talk to people who had food allergies or parents of food allergen children and just ask them to tell me about their experiences with the condition. Very often the conversation would end up being about these epinephrine auto-injectors. People felt very attached to them because they relied on them in such cases to save their lives, so they were really a central part of the patient experience with food allergies. That caught my attention and I wanted to spend a little bit more time thinking about all the different ways that they impact food allergies.

The article follows the device itself, through the different ways that patients use it, encounter it and learn about it. We kind of start off in the clinical encounter; how the physician introduce this device, how do they educate them (patients) on it, what the patients take away from that interaction which isn't always what they physician intends. Then from there how does this device affects their relationships in their communities, relationships with schools if they have allergic children and how it affects family relationships.

I end the piece by looking at how talking about epinephrine auto injectors is actually a key aspect of how the food allergy community builds a community. People with allergies and parents of food allergic children spend a lot of time talking about these devices and how they save their lives, exchanging news, exchanging updates about food research or new devices on the market. So it's really a way for people to connect by talking about their shared experience around this technology, and build a community which then has other effects as well.

As an anthropologist I’m using what are called ethnographic methods. It's a very open ended research method in some ways, where you kind of go in and talk to people, some people call it deep hanging out. You follow people through their daily lives and really understand what they think about their lives and you observe what they do, and sometimes there's a mismatch. This is a method that I use for researching food allergy and for my more recent research as well. A Lot of my research was interviews with people, attending food events, allergy advocacy events and things like that.

I think that it reveals a side of medicine that we often overlook. We talk a lot about the economics of health care, investments, cutting edge technologies, but we don't spend as much time I think as a society really sitting down and listening in detailed ways to how people experience them and patients experiences. I think these kind of ethnographic deep hanging out methods, lets you really get inside of people's lives and understand what it looks like from an everyday perspective, to be dealing with medical industry to be learning about medical treatments, to be a patient.

Theres a lot of ethical and moral questions, you know the title of the article the moral life of epinephrine, in the United States kind of gives that away. I think one of the places where there's maybe more of a dilemma is when patients are faced with emergency situations when they are starting to experience an allergic reactions and making the decision of whether or not to use their auto-injectors.

One of the big dilemmas that people face is cost, so these devices have become more costly over the past ten years or so and using one might eventually cost a person several hundred dollars out of pocket to replace it. There's often a calculation nowadays for people who are deciding, is this a serious enough to actually need the injection, serious enough situation that I can afford to pull out and replace this device for the next time.

Another dilemma and one that us faced by adults with food allergies, is that of trying to decide whether to use the auto-injector and to get the appropriate follow-up treatment which means they are not going be able to follow up on responsibilities for the rest of the day, probably will have to go to the ER, they might have a follow-up doctor’s visit, they might feel very tired after using the medications etc. There's always this decision making process about “can I let down all of those people in my life, can I sort of skip all those other issues to take care of myself”. From the outside it's easy to say yes, of course you should, you should always put your health first but when you are a person balancing a lot of responsibilities it can be very difficult decision.

Part of the reason why I draw on Sharyl Mattingly’s work is that she does a really good job thinking about the clinical encounters between patients or parents of patients and physicians. One of the things that are at stake are socioeconomic factors. It might be in obvious ways in that a doctors is recommending that a patient get a treatment that the patient sure know that they can't afford or their not sure that they can afford. That might make them a little bit suspicious, a little bit hesitant in the interaction and the doctor is not necessarily going to know why, so there's that level that I think it's really important for physicians to keep in mind.

There’s this other layer of different understandings of what is right and good. This kind of moral question, for a patient theres a lot of things that they might be thinking about, what is a good treatment. It might be a treatment that doesn't have too many side effects so that they can keep living their lives, it might be a treatment that does treat long term potential outcomes of a condition, a treatment that is accessible to them financially, or is offered in a location that convenient where they can take a reasonable time off from work where they wont lose their job to access the treatment. There are all of these factors some of them are tied to society, economics or community expectations about involvement in community or family events. I think these often get lost in the patient-physician encounter, especially nowadays when we’re really crunched for time, as physicians might be trying to fit in six or eight patients in an hour.

The hospital or clinical facility is a context for a lot of these interactions and it structures what can happen in a doctor-patient interaction. That means that it also structures how a patient encounters information about their condition, treatment, and therefore can really shape how they feel about it and what they feel is accessible to them. In a way we might think of the doctor patient interaction not as starting when the doctor-patient sit down together, but its starting as soon as a patient walks into a facility. There's the question of how do we structure healthcare delivery in terms of diagnosis, treatments and prescriptions, but also do we structure the entire experience of being in a healthcare setting for a patient.

One way that people are starting to think about this especially in Europe, is to the lens of something called services-time. Therefore thinking about what does a service look like from the person using it, so in this case from the patient perspective and how do we drill down into all of the different steps, all of the different encounters that the individual has from their encounter with the space, their experience in the parking lot, their experience with the receptionist, biller, as well their experience in the clinic room and with their physician. How do you kind of drill down and make all these areas work in the best way possible?

Some of these solutions might be technological, technological infrastructure, it might mean having the right digital or EMR tools to make interactions seeming-less. Some of those might be on the side of personnel and training and making sure people are really knowledgeable about their particular role but also a little bit knowledgeable about the other roles of the people in the office so that they can facilitate the person getting what they need within the context .

Some of that depends on the medical knowledge of the providers; the physicians, nurses, nurse practitioners, physician assistants, laboratory technicians and so on. Ensuring that you have the right cast of characters and the right kind of expertise to provide the service that someone needs when they walk in. I think that's a really important way to be thinking about healthcare delivery, we should be thinking about health care facilities right now.

The other piece is, what is the patient prepared for, what are they educated about? In the case of epinephrine auto-injectors, there's a lot of support for patient education and patient preparedness from the pharmaceutical companies that produce these devices, as well as from a host of patient advocacy organizations. On the pharmaceutical side there's educational videos demonstrating how to use the device. On the patient advocacy side there are some advocacy groups that directly provide educational materials like Forbes For Schools or colleagues to learn how to use the device, videos demonstrating the device, webinar series talking about updates and developments and new improvements as well as support for local support groups. There are a couple of organizations like Kids with Food Allergies or the Food Allergies Research and Education Organization Fair that both support local support groups where individuals who are facing a new diagnoses themselves or in the family can go find local experts, learn about these techniques etc.

One of the things about food allergies is patients being prepared with an epinephrine auto-injectors, being ready to use it is one piece of a much larger puzzle. There's a lot of steps that come before that where you could be preventing an allergic reaction in the first place. Things like;

  1. Asking the right questions of your waiter when you eat out.

  2. Learning how to read a food label to know all the different names that your allergy might go by to avoid it.

  3. Knowing which brands might be manufactured in a facility that might be safe for you, which brands might not be.

  4. Changing your cooking techniques, kitchen organization techniques to make sure that foods that are safe for you are isolated from materials that might not be.

Medicine isn't just about treating our bodies, by treating our bodies it actually lets us be full social, moral actors. Appreciating how complex and difficult that is I think could really heighten the respective importance of medicine and medical care in some ways. In the case of food allergies a really big part of treatment or prevention strategies is actually community based. Its making sure that chefs and cooks in your community know enough about food allergies to respond when someone in a restaurant says they have a food allergy.

It's about teachers and schools employees knowing enough about food allergies to know how to adequately clean tables or desks and classrooms to make sure that there’s no peanut butter smeared on a desk or something like that. There are a lot of community steps that can be taken around food allergies in particular but again I think that that's not how we typically think of medicine and illness in the United States.

We typically think of it as an individual problem that is in an individual's body but there's all of these social and community issues not only about how we get treatment but also about how to prevent illness. Each of us can be more appreciative of that and more interested in saying, “okay is there one or two small things that I can do in my behavior that will make it safe for someone else” that will make someone else live a more healthful productive life.

I think patient advocacy is becoming a bigger and bigger part of healthcare environment especially in the United States. It’s also becoming more increasingly consolidated and more professionalize so theres a lot of back and forth between patient advocacy groups and healthcare groups like insurers and pharmaceutical companies. In some cases becoming more closely aligned with pharmaceutical companies.

I think that's good because it gives some of these groups a larger reach and a voice in healthcare. However, I also think it's very important to consider how can we maintain the independence of patient advocacy and how can we make sure that it's really representing interest and needs of patients. Rather than interests and needs of these actors who are well represented in the healthcare system. I think that's a challenge for patients activists, how to grow but maintain that fidelity to the needs of people who don't necessarily have a voice.

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