Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
Fort Lauderdale, FL | Minneapolis, MN | Chigago, IL | Boston, MA| California | Cleveland, OH |Read More
"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.".
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.
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.
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.
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 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.
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.
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.
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.
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!
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
"Patient centered care is achievable; it might be difficult but it is attainable. Nurses have to go in and say, this is the reason I came into this business, to make a difference in my patients lives" Joy Chin, BSN, RN.
I make sure patients paperwork are in order, ensuring patient don't cancel on the day of surgery, so if they need any kind of clearance i.e cardiac clearance that's where I come in and make sure all of that is taken care of. Now usually when my patients come in, we have a little office which is kind of nice that because you get to sit down with a patient face to face. When patients come in to who are having their procedure, firstly, you want to make sure that patients know why their there. Question; Why are you having this surgery? Did you have a second opinion? Did your doctor explain the procedure to you when you first met him or her?
It's important to make sure that the doctor is talking to the patient not a medical assistant, or event a nurse practitioner or a physician assistant should not be explaining the procedure to the patient the first time. The surgeon should be the one talking to the patent because they are the ones performing the procedures. I ensure that the patient is aware of what's going on, we ask questions about after surgery.
Where are your recovering? If the individual is having a joint replacement; Are you going to have rehabilitation? Are you going to have someone coming to your home for rehab? That's important, you want to find out if the patient lives alone. If the patient lives alone and their going home that same day, they can't go home by themselves. That needs to be told to the doctor. Questioning, did you arrange for the patient to have a 23 hour observation? Is the patient going to have a family member coming in from out of state etc.
Most of the time patients are not prepared due to time restraint when their in the doctor’s office. Patients are and I’m sorry to say this but they are kind of (treated) like an assembly line. Basically in the office a medical assistant might come in and talk to the patient, here's your PAT pre-admission testing appointment and they will fill you in. When the patient arrives they are like “can you explain this procedure to me” at which point we’re like no, the surgeon is the one doing the cutting.
We’re not doing a procedure. We’re just making sure, that you’re cleared and that no hiccups will occur on the day of surgery. Usually the patient has to be redirected back to the surgeon’s office or we’re actually being advocate for the patient doctor, and saying “Ms. Smith is still not sure why she's having this procedure, she don't know what type of procedure it will be. Are you going to make an incision, or is it going to be laparoscopic, what are you doing? This patient needs additional teaching. We then have to send the patient back to the office, mostly, their very close. Sometimes, we call a shuttle for the patient to be transported from the hospital back to the doctor’s office.
It's always about getting to the core; Do you know what you’re having? Do you know what’s happening? The patient will then respond “Well the doctor says that I need this surgery”. To which we respond, we need to know what do you think, do you think you need this surgery, do you, did you get a second opinion. We have talk to our patients, we have to build a rapport. We have to make sure the patient feels comfortable, provide a safe and secure, non-judgmental environment for the patient.
When you do that, you'll hear a lot of stuff that you didn't even ask but you’ll find out. You’ll find out that M.s Smith lost her husband a month ago, but no one knew. Then she lost her insurance, and now she's not even taking her medication because she doesn't have insurance to pay for it. Therefore, its not that the patient is being non compliant on purpose, the patient is just not being helped. Finding out, get to the core, listen to the patient.
The majority of nurses, when we come into our profession. We’re coming into our profession with this positive idealistic mindset. Saying we’re going to do good for our patients, we will make an positive impact, and make a difference in their lives. You get on the unit you have barriers. Barriers such as time restraint, we’re always pressed for time.
The nurse to patient ratio is very high, you have six patient to a nurse etc. Clinician face situations with excessive charting, double charting, you’re putting the same information in different places. They do say if it's not documented it didn't happen, however, if its documented once why do we need to have it in three different places? Documentation, high patient ratio, press for time are some of the barriers that I can think of and I’m sure they are more.
Patient centered care is achievable, it might be difficult but it is attainable. Nurses have to go in and say “this is the reason I came into this business, to make a difference in my patients lives. Therefore I’m going to set goals; even If I set goals to meet two patients needs that day. It's better than meeting non. If I go on and make small changes like make eye contact.
For example, I will touch my patient, I’m NOT going in with the computer and talk to the computer while I’m talking to my patient. I’m going to listen to what my patient is saying. I’m going to turn and then and say I hear you I feel your pain, how are you feeling this morning, how are you coping? Is there anything I can do to make your visit much more pleasant? Its about how we attack our day, When we come in and say, I know all of this is happening around me but this is what I’m going to for my patient.
There are different ways of inquiring about social determinants of health. Finding out where the patient lives, how is the patient living condition at home, is the patient having difficulty providing, funds to obtain their medication? How about food, are they able to provide for themselves? Will they have to use the money that they will be buying their medication to buy food and pay their rent? This is how you find out these things, by communicating with your patient and inquiring about where, the need is lacking.
Social service, case management at work I usually try to always get a consult. Not by discharge, but try to get that ahead of time. By the time of the hospitalization so that they can figure out where the patient will need help. Inquiring about basic needs, family member, neighbors that can help. We just need to facilitate the line between where this patient is coming from and meet this patient at their level, at their preference.
We need to treat the patient to how they can adopt to the healthcare. Not like, okay you’re supposed to be meeting us at this level, so I’m sorry. No, that's not what we’re supposed to be helping patients by asking them how we can be beneficial to them. Getting the patient involved in their decision making, can you share how you would like us to take care of you? What will help in your condition. Finding out where the patient is at.
When the patient comes in and they have a wall up, almost saying, you’re the nurse I’m the patient, and you think I don't know about myself but I do. You a s a nurse is basically going to say, Ms. Smith tell me about yourself. Patients do not want you in their face telling them, this is what you need to do, this is how it's going to be. Instead, do you prefer to have your treatment, in the middle because you tend to be up in the middle of the day?
How can we work around that to make everything goes smoothly for you”? Do to prefer to go to physical therapy, mid day because your arthritis acts up in the morning?” Or the nurse should be talking to the physical therapist, asking what time they will arrive to tend to Ms. smith. Should we medicate her 30-45 minutes before she goes to physical therapy?
If the patient knows that you’re willing to work with them and meet them at their level. i/e non-judgmental environment, you have to be able to provide that for them. I try to encourage my patients to ask a lot of questions. The department that I’m in, I encourage a lot of questions, because patients tend to say “the doctor said this is how it's supposed to be so that's it.I say question the doctor, don't be afraid to question the doctor, If you don't feel comfortable within yourself ask is this the only choice that I have or do I have a second choice? Do I have to have this surgery now? Can it be delayed, can I have conservative therapy, before actually going into surgery. They will meet you at your level. Have your list, bring it with you to the doctor’s office, and check off questions as they are answered.Don't leave that office, do not leave that office, do not get up out that chair until all of your questions are answered. I try to empower my patients, exposing, we're not trying to cripple you, when you leave and go back to your pre-existing hospitalization state, we're not going to be there with you. I want you to be equipped with this tool. So that when you encourage additional healthcare services you are able to interact and feel at ease with what you have on board.
Regina Holliday’s #Cinderblocks5 was a patient led conference by Regina Holliday, a Maryland based patient advocate and artist. Regina is well known for founding #TheWalkingGallery in which she paints a series of murals signifying the importance of change in the healthcare environment.
The Walking Gallery consist of patients whose patient stories are painted onto their jackets. The idea is to connect people, and improve healthcare. Those that wore their patient story seemed empowered by their patient journey and experiences. The direct connection between policies, individual stories, lived experiences and the need for change in the healthcare system was evident on the displayed painted jackets. In attendance were patients, providers, technicians, artist, informatics professionals, change makers, government representatives, social media podcaster, blogger, and myself as a vlogger. The theme of this year’s Cinderblocks was “The Many Hats We Wear”.
Heather Hanline, of Oakland MD presentation on The Dover Center. She presented on the correlation between health disparity trauma and sexual violence. She spoke of the many different ways that social determinants of health impacts the health of the battered women that seeks care and rehabilitation at the Dover Center. Following a pattern of elevating the voice of vulnerable populations was Mary Anner Sterling, CEA of Ashburn Virginia who spoke about the many ways in which the caregiving experience can be improved through reformed policies. As a former caregiver I related to the many challenges she pinpointed during her speech, i.e lack of resources around caring for the elderly population etc.
Robb Fulks a new participant to he Patient Orator, Patient Advocacy vlogs shared his patient story. He discussed the many barriers he faced in receiving the care having lived with 4 major illnesses. Rob story is unique to his own lived experience but similar in narrative to the many stories I’ve heard all across the United States. He shared “HIV saved my life, because It wasn't until I was diagnosed that I was able to get the medical coverage I needed, although I’d been living with 3 major diseases prior to diagnosis”.
Similarly, Ashley Elliot gave a moving speech on the Opioid Epidemic in rural communities. Her Patient Orator story on patient empowerment pre and post sobriety will be added to the vlog discussion in the upcoming weeks. We spoke extensively, on the many issues faced by young people in communities where recreational activities are limited and ways in which that influences drug usages.
Jade Kenney and Kendra Brill spoke about their project, the Rainbow Bridge Home in LA Vale, MD. Kendra shared her own experiences living as an transgendered woman. She shared her experience with the prison system, in which she was denied appropriate medical care. Kendra’s shared her passion for empowering the LGBTQIA community. She expressed that her goals for the Rainbow Bridge Home is to create a safe space at local level. Kendra stated “I passionately believe all across America, the time has come to create a movement. A movement that advocates for equality of rights and respect for diversity at local and national level”.
During the breakout lunch sessions on both days, I spent my time talking to those sitting around me, learning about life in Garrett county as it relates to health access. I was told that the nearest emergency room is located approximately 25 miles away. I inquired about what that meant for those that didn't have a car; it was clear that should there be an emergency, things could become complicated very quickly for poverty stricken community members. For those that live in Garrett county, this is the way of life, those that I spoke with had no complains but were optimistic of change.
In short, I left #Cindeblocks5 feeling re-energized and ready to continue on the journey of bringing the many issues in healthcare to the forefront. #Cinderblocks6 is scheduled to take place in Grantsville, MD on July 18-2019.