Equality, Quality, Respect in Health Care | Alan Manning

We talk all the time about consumerism in healthcare and quite honestly it's one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops. They're going to go where the insurance is covered,

Alan Manning is the Executive Vice President of Planetree International Inc..

Alan’s Story

What makes me passionate about health care actually is my daughter, I joined Planetree seven years ago now because I wanted to help change healthcare. I thought that the system was broken and I went on a national search looking for an organization that I thought could really make a difference, and I found this great place called Planetree. Because ten years ago, this past May my firstborn daughter was born and at two days old I got a call from my wife saying there's something wrong with Katie's heart. At four days old, Katie had her first open-heart surgery and over the next six months Katie had five open heart surgeries and four heart catheterizations before unfortunately she passed away when she was six months old.

So, actually next month is a ten year anniversary of my daughter's passing. It's actually really moving yesterday to be here and meet our founder of Planetree on the same day that this time 10 years ago sitting at my daughter's bedside in the last month I'll ever meet her.  My passion and my drive is my daughter, she's my inspiration for what I do. More than that, it's the people I met during her care, I met some amazing, amazing people who provide incredible care to patients, but I found a system that wasn't supporting them particularly well and I wanted to get involved and help and make a difference.

Surviving the Death of a Child

I tell people all the time, I'd be lying if I said it was a greater purpose, I miss her, I wish it never happen. I wish I never got involved in healthcare, I wish I didn't have to know what I know. But these are all, we all got paths, every one of us, so my story is my story, you have a story, everybody out there has a story and we just have to go on the journey we're on. I'm fortunate to have two wonderful boys who are eight and six and remind me of their sister every day and my wife and I started a non-profit in her honor and we helped critically ill kids in pediatric ICUs and the story I always tell people is when my daughter was born, I thought that she changed the world.

My heroes are Nelson Mandela and Martin Luther King and Mary Robinson the first female president of Ireland. When she got sick, and she passed away I didn't know that, that would happen but a couple of years ago, I got word of a girl back in Ireland where I'm from, who was seven years old and wasn't able to walk. Her name was Katie just like my daughter and my organization was able to sponsor her to come over to the United States to get a spinal surgery that allowed her to walk for the first time. So When I said that my daughter was going to change the world I was right in some small ways so she did have an impact on somebody else's life so her legacy lives on.

The organization is called Kisses from Katie Inc. and we help children, families and caregivers of kids of  pediatric ICU because although our outcome with our daughter wasn't what we wanted, we were actually very lucky. We had the financial resources, we had the education, we looked and sounded like the doctors, so we got along with them. We saw many people who didn't have the same access so we started an organization to help those people and today we do simple things. Our motto is to take the edge off and we do simple things like we pay mortgages for families who are getting ready to lose their house or pay their rent. We've bought washing machines for families, we assists by helping children get into the car, so very functional practical things, the things that really get in the way of people being able to live their life and live their truth in the way that they want.

Patient Experience & Health Care

Our experience at Planetree, we see that every patient struggles with the healthcare system, from the most affluent, to the least empowered. Obviously it gets harder, the lesser education, the lower wealth. We talk all the time about consumerism in healthcare and quite honestly it's one of my biggest frustrations because I think consumerism is an entitled approach for the 1%. I know many people who consumerism for them is wherever the bus stops or wherever the subway stops.  They're going to go where the insurance is covered, so we talked about these choices that patients have, but in truth our healthcare system doesn't provide people as many choices.

In fact when I think about what my work with Kisses from Katie Inc., I'll never forget watching them do open-heart surgery on my daughter in her room because I couldn't stabilize her to bring her downstairs and when the medical team came out, as they were talking to us, the girl in the next room coded. I ran in there and a mother came out she was crying and my wife and I went over to console her and I looked at her and said I think your daughter has the same thing my daughter has because everybody in ICU knows each other's business.

I said does your daughter have HLHS too and she said no my daughter has hypoplastic left heart syndrome HLHS? Her daughter was 6 to 9 months old and this poor mother didn't know that hypoplastic left heart syndrome was HLHS which means she could never read anything of the material. I mean she never understood anything the doctors were saying because they don't call it hypoplastic left heart syndrome, they call it HLHS. I looked and I politely said I think it's the same thing.

My heart went out to that mother that night because she was about 16 or 17 year old single mom. The night before, I heard her dad yelling at her through the wall, “if you hadn't put yourself in a situation none of this would have happened”. So, what chance does this mother, does this child have for success. Unfortunately, we don't have a system in America that help families navigate and traverse that define success. I think we spent too much time on sickness and medicine and not enough on understanding that this is just a part of people's life journey.

My goal for health care is a equality, quality and respect, it's that simple. I want a equality that everybody gets access to appropriate care. I want to make sure that the care they get is top quality care. I want to make sure that they're dignified and respected through that process.

Fostering the Patient Voice in Medicine | Sarah Kucharski

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media.

Sarah E. Kucharski is a patient advocate, speaker, writer, patient, communications and health care consultant

Sarah’s Story

I got  involved in patient advocacy because I am a rare disease patient and as a rare disease patient it is extremely important to be able to be actively engaged in care to take a certain responsibility for directing your care, because you’re yourself 24/7, 365 and that's a lot more time than the doctors will ever really get to spend with you. I was diagnosed with rare disease when I was 31 and it actually came about because I had done a lot of investigation into my own care. My background is as a journalist and so I'd read all the information that I could get my hands on, done the research, read the medical journals and actually written an email to a doctor at the Cleveland Clinic and said, I know that sounds kind of crazy, but I think that I have this rare disease. She wrote back and said, I think you're right.

My medical history had been really complicated, for years as a teen preteen, I'd actually presented with gastrointestinal trouble and nobody ever thought GI problems, vascular cause. It took a very long time for us to even get to the point that anyone started looking down that path. I went through having triple bypass surgery that ultimately failed. I lost my left kidney. I had a stroke, four brain aneurysms, three of which were coiled and a gastric rupture. After having that in a period of about five to six years, that's when I said he didn't. Nobody has just this bad luck, like there's got to be something more here. There's got to be something overarching and that's when I really got serious about doing my research and reach the diagnosis.

Isolation & Rare Disease

Living with rare disease, anyone will tell you that it's isolating because you're not just going to like bump into somebody on the elevator who shares your same diagnosis and it's not the kind of thing that there are sport group meetings held in the local church basement either and so is really about social media. That without the Internet, without twitter and Facebook, or even registries and individual hospital systems, their forum board, etc.,, it would be so incredibly hard to find a patient community. We can maybe be a little less particular in that maybe a person doesn't have to share exactly our same diagnosis, but they are a rare disease patient too. So they understand some of the struggles of achieving diagnosis, of routine care, of having anybody else who says, you know, yes, me too, I know what that's like.

Health & Patient Empowerment

As far as my health, knock on wood, everything's actually pretty good right now. Things have been quiet, from just a pure health standpoint, I'm doing great. Thinking about the patient experience and its role in health care for rare disease patients, there's a saying of when you hear hoofbeats look for horses, but we need providers who are willing to entertain the notion that sometimes hoofbeats actually are zebras.

We need people who are willing to think outside the box and be curious. Curiosity, I think is one of the most valuable components of any person is what pursues you to find answers, to explore things, to get new knowledge about anything and so I would encourage that risk taking, that curiosity and if we can use that in a way that advances care, that is not reckless. I think perhaps sometimes people think of curiosity and in rare disease diagnosis as trying to be house MD and it's not necessarily about that. It's about really just asking the questions to explore the possibilities.

Rare Disease & Stigma

Having a rare disease inherently. I think people they hear that and they pause for a moment of it may very well be based in fear of what is this thing? Can it impact me? Is it transferable? Anything like that in rare diseases are really so much more common than people realize. The last statistics that I read about rare diseases was that combined, they affect more than like aids and cancer combined because there are 7,000 known rare diseases. It just means that we're a very fragmented population, but chances are, you actually probably know someone with a rare disease and there are diseases that you may have heard of that get a little bit more name recognition that it's not necessarily as rare as you may think, in a way. It's not something to be afraid of because actually research into rare diseases has unlocked information about many more common diseases that when you look at research studies and research arms that pursuing the mechanisms of these rare diseases, we can find out so much more about things that are more comments such as alzheimer's or diabetes.

Outlook on the Healthcare Environment

My overall outlook on the healthcare environment has changed over the past six years or so. In a way I feel like I used to be more hopeful because I was also more naive. Seeing how long change takes is maddening and depressing in a way. We're still trying so hard to push some of the same needles that we were trying to push years ago. I'm not someone who's been at this for 20, 30 years and I'm frustrated. There have been things that have happened politically that have pushed us backwards and I worry that for people like me, we may lose some of the protections that we’ve gained. I try very hard to maintain a sense of optimism and actually one of the guys here at Planetree, his name is Alan Manning and he's actually, I think VP of Planetree. He gave a wonderful lesson on hope as a speaker here a few years ago that he said; hope can change, hope isn't a stagnant thing. I had always worried that the people who felt like they hoped for change weren't maybe doing enough to impact it, but we can hope for different things in that whole change along the pathway that it grows and it becomes something that expands based on what we've learned. That's the first definition of hope that I've ever really liked. It makes me feel like it does respond to the changes around us.

Advice to All

I want to encourage people to stay at it, to keep trying to make a difference, to maybe know when they get into it that the needle move slowly or at least know that they're not alone in feeling like the needle is moving so slowly. That may be a different problem that we have to solve. We talk about physician burnout, we talk about patient burnout. How can we address burnout from trying to make things better, from trying to find solutions from getting ourselves to a point that we're not going to give up.

Planetree’s Impact

The Planetree organization and this conference is something that I learned about I think three, maybe four years ago and I was utterly shocked that I had not heard about them sooner because this was a group that I could say was actually doing everything right. That how they're approaching care, how they're focusing on patient centered care, but from a very provider focused angle is really interesting. It's really encouraging and it's something that I as a patient support because we often talk about patient experience as being something that’s so patient focused without talking about the people who are actually supposed to provide the care, and caring for those people. Making their environment, their jobs, their reward system, something that is conducive to a healthy care environment, that's only going to benefit all of us. I hope that more people get involved with Planetree. I hope that more systems see opportunities for patient engagement that aren't solely patient focused, but that we have opportunities to contribute to measures that will improve provider staff, employee care, so that they can do a great job of caring for us.

The Story of e-Patient Dave | Dave deBronkart

The mission of my advocacy is to help health care achieve its potential, not just for the patients and families, the ones who are trying to avoid a death or cure a chronic condition or something, but also for the people who saved my life.

Dave deBronkart is known on the internet as e-Patient Dave. He is an advocate for the e-patient movement where the E is for; engaged, empowered, equipped, enabled, educated, etc. The e-patient movement as he states, are patients who really take responsibility for having an active role in their health and their care and they seek out doctors and nurses who welcome that.

Becoming an e-Patient

It's funny, in the 1960 presidential election, John F. Kennedy was running and the reporter asked him how did you become a war hero and he said it was involuntary they sank my boat. That's what happened with me, I found out I was almost dead of stage four cancer and in the process of helping my doctors and nurses saved my life, I was actively involved and then after that I discovered that the way I had acted was called being an e-patient. Turns out my doctor Danny Sands is one of the pioneers of that movement.

Twenty years ago he wrote the first medical journal peer-reviewed journal article on how to do doctor/patient email, 1998 in the last century. We have so many patients today whose doctors don't want to do email. First of all during my disease, he recommended an online patient community for me, so yes, my doctor sent me to the Internet, which is amazing.

It's funny because so many doctors today say patients should stay off the internet because there's no guarantee of quality of what's out there. Dr. Sands took the opposite position, there's no guarantee of what's out there so I'll recommend something. Some people think that patient empowerment is about overthrowing medical expertise. To the contrary Dr. Sands and I both look at it as how do we use his expertise in today's world, instead of trying to hold back the tide.

I started blogging about the e-patient movement, because after I got better he told me about it and then it just so happened that a blog post landed on the front page of the Boston Globe newspaper, I started getting invited to policy meetings in Washington and to give speeches.

Patient Engagement and the Internet

There's an error in the mythology of this e-Patient Dave guy because once you become an Internet thing you lose control of it. I have a TED talk and the description of the TED talk is wrong, but they won't change it, so who know there's unreliable information on the Internet. It says that I faced an incurable disease and went to the internet and found a cure that my doctors didn't know about, that's not correct, number one, my doctor sent me to the Internet, number two, they told me about the only treatment that might cure a person back in 2007. That was before I actually got to the oncologist at my hospital and they offered it and they said that they were already planning to see if I would qualify for it.

What led me to be an engaged patient was nothing different from what led me to be an engaged buyer of cars or televisions. I just like to be responsible for my decisions. Although, I'm not a TV engineer or a car engineer or even a car mechanic. I make it a point to learn what I can, so that's it. I had no idea I was doing something that's considered abnormal in medicine.

Patient Empowerment

I never say you should be like me, because I mean the essence of patient-centered care is to realize that the whole point is to help somebody with their needs as they define them. Some people want a ton of information, whether it's about buying cars or dealing with cancer or anything. Some people say that drives me nuts, if you want to take care of me boil it down and just tell me what I need to do I'll follow your instructions. That's how I am with cars.


The mission of my advocacy is to help health care achieve its potential, not just for the patients and families the ones who are trying to avoid a death or cure a chronic condition or something, but also for the people who saved my life. To get into that department of that hospital, they had to do a whole lot of work beyond what I did in college, they had to take additional schooling, they had to study hard in ways that I didn't, they had to pass additional exams and not only that but once they got licensed, they ha

d to do good enough work over the years that they got promoted into those units. I want them to have a good life also. My mission really is for health care to achieve its potential, and so for some people who want to be involved, I want them to know that it's legitimate for them to think and ask questions. I want their care providers to realize that it's legitimate as well and they should never say stop googling and stay off the internet, if somebody wants to be involved and help, give them a shovel so they can do some of the work, find a way to do it. It doesn't have to be the MDs time by the way, there can be numerous other people in the practice that can coach the patient and help them develop their skills.

Utopia Healthcare

How do we how do we make everyone happy at the same time? The honest truth and I say this as a businessman, I am not anti-money, I am not anti-business, I have opinions about what would be the best way to do things. But, the reality is that, all of those parties, patients, doctors, hospitals and so on in particular unique -- I've spoken in 19 countries now, 600 events I've seen a lot of different health systems and the thing that is uniquely American is the pressure of boards of directors to protect every individual organizations assets. Whether it's a for-profit company trying to produce dividends, or a non-profit that needs to bridge, it's a real problem, but that's not something I can address. All I'm trying to do is sort of alter the quality of the water in the pond that we all drink from. If we fail to notice that informed patients can improve how well it all works out, nobody's going to be hurt by that right. The whole process of patient arrives at the doorstep of health care, something happens and you end up with an outcome if the patient is more capable more is possible.

If you want to see how common-sense this is, imagine taking it the other way around, imagine you start with a world of capable people, and then make one of them dumb. Obvious, I'm exaggerating I’m using a rude word when I say dumb, but obviously things can't work out as well. So, we’re just running that movie backwards, we're starting out with people who don't realize -- we have so many people so many stories of people who have improved their outcome. In my case, the only drug that might have saved me had side effects that sometimes kill people. Now, the normal thing to do is say boy I hope I'm one of the lucky ones, but I'd never heard of e-patients, I said so how do I prepare for the side-effects. The oncologist said nobody's ever asked us that. I talked to the oncologist first, I didn't say who needs doctors. I talked to the oncologist first, he said we don't have any advice. I turned to the patients they gave me 17 firsthand stories and none of it was any guarantee, but afterwards the oncologist said I wish we could bottle what you did and administer it to other patients.

He actually said in the BMJ, the British Medical Journal I don't know if you could have tolerated as much medicine, if you hadn't been so prepared. Think about that, I don't know if you could have tolerated enough medicine if you hadn't been so engaged is what he said. I would quite likely be dead, and you know what else--- He didn't just say that in passing, they have a booklet now on how to deal with the side effects, so that's real doctor-patient partnership, learning from each other and all of us are better off because of the partnership. That's exactly what I mean.

Legacy of e-Patient Dave

I would like my legacy ultimately to be that 50,20,10,5 years from now be that it's normal for people to go looking for information, and for the medical practice to welcome it. I think it would make the world of sense to have a prep call before the visit. Many business meetings you'll have a prep call before they bring up some issues, so that when you actually get there, your time is more productive. Why not do that with doctor visits? Cigarette smoking finally came to an end, when we started teaching kids in grade school about the dangers of smoking, and made go ew. We're still trying to do that with sugary drinks, and so on. Actually last week I had my first example of my daughter's a high school science teacher, and I taught a lecture in her class on patient engagement and empowerment and shifting from paternalism to autonomy. Why not start teaching kids to think for themselves, why not start teaching them how to Google safely even when they're in grade school or whatever is the appropriate grade. Because, then as people grow up thinking for themselves, it'll be natural not just for the patients, but there are a bunch of those little kids that will be doctors someday too and they'll grow up thinking it's natural.


Really it all boils down to, there's a wonderful woman named Alexandra Drain, who was sort of my spirit guide in the early days of my doing this work and we had a lunch meeting one day and I went off to a cubical outside her office. She said if you want people to support you, you need something that's more inspiring than Dave deBronkart or even e-Patient Dave. I came back a half an hour later with the slogan “let Patients Help”, which really embodies it all. At the end of my TED talk I got the crowd chanting “Let Patients Help” it became the title of my book. This emphasizes it's not about overthrowing physicians, it's about the reality that patients can help make health care achieve its potential better