"One thing I noticed along the way was that the oncologist was doing his job in his swim lane, the dermatologist in his swim lane, the rheumatologist in his swim lane and nobody was really talking to each other. There's those areas of care coordination that to me seemed a bit lacking" Michael Joseph, PMP.
Michael Joseph, PMP is a chronic illness patient from Northern Virginia, currently the founder & C.E.O. of Prime Dimensions and Executive Director of Empathy. Health.
Michael’s Patient Story; Leukemia Diagnosis & The Road To Remission
It goes back to January of 2010, the most devastating news was a diagnosis of leukemia in early January of 2010. At the time my wife was six weeks pregnant and I was not rather young at that point. I thought I waited this long to have a kid and now this happens. It was quite devastating to the family, to my existence as a father to be etc.
I can go into a very long story about that whole ordeal from January through August of 2010 but I'll spare your viewers because I don’t want to go into details. Suffice to say, it was pretty bad from a physical and emotional standpoint. Psychologically thinking that I'm not going to be around to raise my unborn child.
It really became obvious with then an onset of sepsis in June of 2010 on Father's Day weekend no less, Where at that point I'm thinking that this is not going to end well. Not an easy path to get through that even that one incident nine days in the I.C.U and many more months of recovery after that, plus another round of chemo. My daughter was born and I was there for delivery a week after chemo ended. During that time I'm thrilled but I've been looking at my newborn daughter, with the relapse equation and I couldn't get it out of my head.
To have to deal with this “what if” I relapse to go through all kinds of crazy types of procedures again, treatment plan etc. and maybe not make it. With the relapse it's harder to make it, so there's a lot of emotions with the diagnosis of leukemia, under these conditions. For that matter, any diagnosis of leukemia cancer is not a good day for anybody, but it happens to many.
The good news is that there's therapy and new ways to treat cancers today, For my condition in 2010 there was not. It was the normal 1980’s cocktail of chemo that---again eventually led to sepsis later on. I was told I wouldn’t survive without a bone marrow transplant. At that point a bone marrow transplant was on the horizon, no questions asked and that's going to be my path to cure.
The Constructs of Patient Experience Shaped By Hyper Silos Among Care Providers
One thing I noticed along the way was that the oncologist was doing his job in his swim lane, the dermatologist in his swim lane, the rheumatologist in his swim lane, and nobody was really talking to each other. There's those areas of care coordination that to me seemed a bit lacking. What meds to use, how often do you take them, stop them, don't stop them etc., not a lot of clarity there.
That was challenging, although I eventually got to the right answer it wasn't as easy. I didn't know if they were coordinating properly. Then coordinating with the transplant folks up at Hopkins from Georgetown that was another aspect of care coordination. The transplant never happened just for various reasons. Clinically, determination wise there was no perfect match. It was risky, maybe you'll survive, can wait, which I did, so the right decision was made.
One thing that was missing from the experience in my mind, was looking at the impact this has on the whole family. My wife, our unborn daughter and who was looking at that aspect of care from a broader empathetic perspective than just each person----Again just like my swim lane with different diagnoses, the OB-GYN wasn't really looking at how to treat the whole person---or how my wife should deal with the emotional trauma of a husband who has cancer and likewise nobody is doing that. I guess or our system in the U.S is designed to go find that practitioner who would do that.
Get a psychologist if you need it, but nobody really offered to us. It's kind of trying to of course be your own navigator, which for some people is easy for others it’s not. We’re in the middle there, we thought about it but we had so much going on that we figured emotionally, I guess, we could handle it ourselves. It would've been nice to have more navigation in that context of what's going on with the family, aside from was going on with each of us individually, so that was a critical aspect to it.
Fast-forward a couple years I did not relapse and that is the good news, but the bad news is that I had to lose a lot of weight because I thought I would relapse and die, that didn't happen. I figured well if I’m not going to be around much longer I might as well enjoy food. Am I right? That's the opposite of eating healthy, but that’s my mind.
I did all that and didn't relapse and was thrilled. I mean, the two year mark was really the good news. At 2010 being in remission holding my newborn daughter, minutes old was a great moment. Fast forward two years later was a better moment because at that point I’m pretty confident that the chances of relapse are in the single digits. That was a great day probably around August of 2012.
The Reality Of Cancer Diagnosis, Treatment Risks & Living A New Normal
When you get a diagnosis with cancer there's always going to be a risk of the treatment that's just the way it is. Maybe there's less risk for some cancers today with the immunotherapy and different pathways for bone marrow transplants for different patients to qualify and how are they to perform a transplant.
There's a lot of medical science to make that journey better and have a better outcome and a better overall experience with the outcome. There could be a day that people just live with a certain diagnosis of cancer take the drugs and they have a mostly normal life, but they just have a new normal because that's the new normal.
My new normal post that event is different. I come out of it a little bit of a different person, a changed person and maybe more urgency to get things done because life is short. Now, when I feel like there are things, obstacles in my way holding me back,
I get frustrated even more than I used to. You would think you'd be the opposite, i.e I'm happy to be alive, just chill, but that's not the way that I've internalized that experience of since recovery. I feel like things should fall into place faster but that's not the way things go. The past doesn't dictate the future but at least it shapes who you are. Your experiences shape who you are.
If you think in terms of a really simple way to think about this, medical science was pretty safe, pretty specific on post chemo immune suppressant. While there are genomic pathways for patients today, that wasn’t an option for me. However, there was evidence, clear evidence to know after chemo that I was receiving when my blood counts would be low enough to have no immune system.
In that scenario you wouldn’t need a digital health solution to guide that. I had a phone, all you need is text messages or a phone call saying just to be careful. I never really got that and so after the first, second, third or first and second round of chemo I got a false sense of security that despite the fact that I'm immune deficient I guess I should just go by my business.
That's the bad way to behave when you have no immune system. I should have inoculated myself, so I can take part of the responsibility, but I think I should of been reminded to inoculate myself. And,-----it's not business as usual when you have zero immune system, any little thing you can go outside and pick up.
There's no guarantee, you can still get sepsis without that, because you have no immune system, something can get you, but at least take every precaution you can to avoid that outcome and that didn't happen. Sure, I should have read more, should have been more informed and more careful but I think the whole care team should have navigated that better.
Patient Perspective; How To Prevent Empathy Voids in Care Delivery
I mean I'm not a psychologist, I’m not an M.D. I've been a patient though and I know I know it when I see it. I can just tell you that I know when somebody’s sincere, compassionate, etc. It’s all synonym, sincerity, compassion, mindfulness but it really means going beyond, "If there's anything you need just let me know", I got that a lot.
I think it’s a well-intended statement, but people need to put themselves in your shoes, and just kind of figure out what you might need and just do it instead of asking, "if you need something just let me know". I think to show up with something you think I might need its a gesture that “you're not alone, we're thinking about you and here this might be helpful to you” instead of asking that open ended question.
I can answer,“you know what this would be nice”, and If they don't deliver its really bad because there’s no sincerity about their statement of “if you need something just let me know”. Then if you ask me and you don't do it there's a problem. The sincerity aspect is critical in showing how they feel your pain.
There are moments through my journey especially during sepsis where people just did not understand the severity of what I was going through because it was just hard to explain how bad this is and that with a child two months away, this is going on. It was really hard for people to put themselves in my situation and understand.
I had an empathy void, aside from really close knit, very few people, an empathy void from a lot of folks. I'm hoping that changes. Sometimes people feel that you don't want to be remind of your illness, and talk about something else. It's on your mind. It's the only thing on my mind, if you talk about the weather or traffic, the ball game etc., you might be thinking you're changing the subject but you’re not.
It’s not going away, just address the elephant in the room. Some people just don't want to do that, they think changing the subject is good. I guess it’s a balance, you don't want to be always dwelling on it but it's not going away in my mind or it didn't go away for two/three years and I still have these sort of PTSD moments of that sepsis battle.
I thought in May of 2010 they called off the bone marrow transplant, smooth sailing chemo. The relapse equation is still there but at least you know I'm not dealing with a transplant which is more traumatic to my body and then of course I get sepsis. Don't ever say things can’t get any worse because that might not be true.
All you can do is take one day at a time and don't speculate about the future too much. As a bit of advice for people going through these kinds of journeys just take everyday you get up is another day that you're still here to win the battle.
Using Patient Journey & Patient Insights To Influence Change In The Healthcare Environment
What I can do overall to contribute to the patient journey, patient’s experience---which is the impetus for empathy.health, part of that was influenced by what's going on here at the conference, Patient Experience Conference. 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 to the dialogue as well. There’s Empathy Princess on Twitter, Merriam. 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.Help as a resource.
Sharing stories with people are great. I get involved in legal help and through Empathy. Help. I hoping to engage patients like me or patients that maybe just have chronic illness too. So, from severe to chronic to everything in between, I’m just trying to be that advocate for empathy and best patient experience.
I could be found on Twitter @healthdata4All. Empathy.Health is also something that I'm involved in as the executive director. If you go to Empathy.Help you can find my blog post about empathy and health care, some other information about our site and how you can get involved.
Then there is also Prime Dimensions which is my technology focusing on healthcare data, analytics and merging solutions from population healthcare management to patient engagement to have a seamless experience. There are numerous ways to find me online and I hope to engage with folks on Twitter or elsewhere.