 Just before my 12th birthday I was diagnosed with the incurable bowel disease known as Crohn's disease. Crohn's disease can affect from your mouth to your backside and I was diagnosed right at the join between the small bowel and the large bowel. And then at 14 I had my first surgery. If you imagine you're intestine as a hose pipe it's several metres long and they cut out the section that's no good and stick the two hose pipes together. I had 25 further surgeries. My bowel ended up at 40 centimetres, it just been chopped away disease, disease. And I reached the point of intestinal failure. Your body can't absorb what you put into it. They said to me, look your bowel isn't going to recover, you're going to need bowel transplants. And one of the big things I knew from my transplant was that I was going to have an ostomy. I was going to have a bag attached to my body and one of my earliest recollections is waking up feeling this bag, this alien thing attached to my body. And I got used to the bag but having a bag is a challenge because what they do as part of surgery is they cut your nerve endings. Here you've got a hole effectively halfway through your intestine, your waist is collected into a bag and you don't know when it's going to come out. So it fills very quickly. So you experience leaks and spills and those things are challenging. And not only that your doctors want to know how much is coming out. So you're basically asked to measure your own shit. And I'm like, this is ridiculous. What do you do to cope? And they're like, just get used to it. And so I was looking at this bag and going, okay, well every time there's output it expands, it changes shape. Surely if I could know when it's going to change shape I could send a signal, I could happily figure it out and I had some help with some friends because I'm not an engineer and we bought some gear on eBay and hacked a sensor. I would sellotape it onto my bag and walk at home and then take it into the hospital and go, look, my bag's beeping. And my doctors were like, that's great for you but it doesn't help me. We still need to know how much shit is coming out and when it's coming out you've got to be able to figure it out. What struck me at the time was people building all these solutions in healthcare, they're giving you all these things whether it be drugs, whether it be technologies, whether it be bandages, whatever it may be. But they're giving it to you rather than building it with you and here I am as the end user, I understand the problem better than anyone else, better than any nurse. If I want to know how to solve a problem I'll go to another patient. So I started building 11 Health just as a way of helping other people hacking our health. I used social media, I'd really got going on social media in the buildup to Transplant and the phone calls and the text as beautiful as they are are endless. And I just started a blog and the blog was really a way of saying this is what's going on and I was really transparent and what I didn't realise is that my healthcare team were reading the blog as well and then they were passing it on to medical students and at some point 100,000 people were reading this blog from around the world just going this is what it's like to experience a Transplant. And I have a WhatsApp group with my surgeon who's now in India, the surgeon that took over in the UK nurse and we speak almost daily and they are part of my life and they're like my second family. We had we had two guilty pleasures going through Transplant. One, Jeremy Kyle, I'm not sure it's a guilty pleasure and Strictly Come Dancing which is again the UK version of Dancing with Stars and there's always every day different blood tests, different blood tests and nurses would always time it around Jeremy Kyle so we could watch another story live on TV because it kind of took you out of your experience and then at the time when I was in hospital there was a quite a cool guy who was hoping to win Strictly Come Dancing and all the nurses would come in and go I gotta see this guy dance, I gotta see him. And I think what's important is that you treat them with the same respect you want back. My surgeon said to me a phrase that is he's very well used you know yesterday's gone and tomorrow hasn't happened to live today and just you know you've now had the gift of another life go live it and I'm very lucky we built this relationship really just based on the trust empathy together and fundamentally I think that's at the heart of healthcare that doctor-patient healthcare professional patient relationship for me is is what underpins you can have all the best technology in the world you can have all the best systems in the world but it's that human-to-human connection that for me is most powerful. My name is Jerry Hickson and I'm just honored to be here today for the World Patient Safety, Science and Technology Summit and I want to welcome you to the third session which is about patient advocacy and I love this title The Compass for Innovation. Now again I said my name is Jerry Hickson I'm a pediatrician by training but for years was the senior vice president for quality safety and risk prevention at Vanderbilt University School of Medicine was a researcher and my research career focused on if we just listen to patients and families they can tell us about our dysfunctional systems where we make it hard to get the right thing done they also can help us identify those team members those medical team members that don't play well with others that get in the way of safety and so I've learned in lots of studies and in real world settings that it's all about listening to your colleagues and respecting your colleagues and so I want to thank you for being here and want you to know how important I think advocacy is. I also just have told you and we'll tell you again we have a great panel but before we get into introducing our great panel I hope you had a chance to view Michael's video if you have it please do so I've watched it four times and every time I've watched it I have picked up picked up on some other things that are incredibly important at this individual who was committed and worked hard to promote change and I think really he's written a game plan for how you get that done and I also was struck by the fact that in spite of all the things that he's faced he modeled respect for everyone and he modeled a sense of humor those things are really important so today we have three panelists who also have made significant contributions that I have known Sue Sheridan for a number of years as a pediatrician she focused on an issue that was near and dear to my heart and Sue briefly introduce yourself at this moment and then we'll introduce others and then I'm going to have some questions for you. Sue who are you? Great thank you Jerry who am I? Most importantly I am I come from the patient community my family had two extensive medical heirs that launched me into patient safety my patient safety career is one that I've been an advocate I've been part of a nonprofit of mothers I worked at PCORI for six years the director of patient family engagement I worked at CMS and engaging patients in policy making I led a program at the WHO on again engaging patients in innovation and driving safer healthcare I'm currently a co-founder of patients for patient safety us that's focusing on re-energizing patient safety in the United States is an umbrella of a program at the WHO. Pleased to be here. I'm glad you're here and I'm also glad uh Susanna Lorenzo is a distinguished colleague from Spain who is joining us today please tell us a little bit about yourself. Hello thank you for the invitation sorry for my English but it is not my mother tongue so I'll do what I'm as much as I can. My name is Susanna Lorenzo I work at Hospital Universitario Fundacional Corcoran yeah I'll go back. My name is Susanna Lorenzo I work at Hospital Universitario Fundacional Corcoran in nearby Madrid and there I am the manager of quality and patient safety at the hospital I take care of patient health and patient management at the hospital I am also the CEO of the journal for healthcare quality research and thank you for being here I'm so upset that this is not in San Francisco Susanna we just we're glad to be able to participate with you anyway we can and we will continue to have opportunities thank you Carol Carol Moss tell us who you are well I am happy to be here first of all I'm honored I'm here today in honor of my son Nile Calvin Moss and I I share the view of hope and I share the stories of success that we've had in finding ways to make healthcare safer as a mother a wife and founder of Nile's project we are a patient safety we are the voice of the patient our goal is to be at every table that's making decisions for the world and so I'm honored to be here and I look forward to a lively conversation today. You know I'm looking forward to that and thank you for introducing yourselves and as I warned her I'm going to turn to Sue first. Sue I want you to share with us about your personal story how you've moved forward those things that I know you have gotten done so if you would lead out and we'll get started and then I have some additional questions that will follow up with everybody at the right time sure I'm happy to kick this off Jerry so what brings me here you know what brings me here is really what I'm going to talk about today is my son Cal and Cal was born in 1995 in a large regional hospital he was perfect at birth but because of a series of a cascading series of failures in our healthcare system Cal fell through the crack several times and he suffered permanent brain damage when he was only five days old from the failure to test and treat his newborn Johnvis from the fear of nurses to speak up when they didn't agree with the pediatrician from the failure of oversight of residents actually from guidelines the American Academy of Pediatric Guidelines on Johnvis management that weren't really as safe as they could be and also they failure to really educate patients and families the parent education materials for me said nothing about dangers of Johnvis so you know my husband and I my late husband and I watched our son suffer brain damage in the hospital and in our arms and before our eyes and I you know I'm sure all the viewers can understand how devastating that is and you know I learned that there was I couldn't you know erase history I couldn't turn back the clock but I decided that I did want to be part of making sure that didn't happen to any other babies or any other parents so I started writing letters and I wrote letters to our government to the AAP to the American Hospital Association to everybody I could think of and eventually I was invited to testify in Washington DC in 2000. There was a lot of media about it and other mothers saw me and they connected with me and said their child suffered brain damage from newborn Johnvis as well and it was because our children weren't getting the dollar test the AAP guidelines were not clear about if there was no universal test for a billy moving that all babies should have it was considered routine but then in the 1990s it started kind of fall off so we all we all realized that a dollar test and maybe better parent education materials could have changed the outcome of our children so we approached our healthcare system we decided to partner with the very healthcare system that failed our newborns and failed us so we approached the Joint Commission the CDC the American Academy of Pediatrics nursing organizations NIH, HRQ, our government we had 17 partners at the end of our you know end of our work and we did all agree to work together on preventing you know this from happening from other babies notably you know the AAP who really establishes the guidelines that are implemented in all of our hospitals not only the United States but in many other hospitals around the world they really look at AAP as you know as a as a leader and we work with the AAP to revise their guidelines to include a universal billy moving test for all babies before their discharge now this was not an easy task at first because this started in 2000 when we moms presented to the AAP our idea about including newborn newborn jaundice testing as a universal universal test and at first they shared with us that well honestly they called me Pollyanna at first and I think that's what it takes you know to have all this hope and maybe I wasn't calling it but we continued working together for years now that was in 2000 today is 2022 we are still working together and so we successfully through a long process changed those guidelines to include universal billy moving test we also changed their parent education materials that beforehand did not say anything about the dangers of jaundice matter of fact the AAP parent education material said don't worry jaundice is normal so we ensured that they included information that jaundice can in rare cases cause very damage that moms and dads need to be part of the you know the extra eyes to prevent this harm so fast forward to today night in 2022 we are still working with the AAP it's with a very good relationship we are now revising the guidelines again and mothers are engaged as partners in revising the guidelines and we have offered significant changes to the guidelines that were at first proposed by the pediatricians and right now we're in the middle of reviewing and revising the parent education materials so the lesson of that whole you know it's been a 22 year relationship is at first it was difficult because this was new territory and now it's getting ingrained the AAP and other agencies who are innovating and working with patients to really drive change so as a pediatrician i want to affirm that change is real slow but it's real and as we come back in a minute and i'm going to ask you to reflect on some key things that made a difference yep your tenacity has been one of those and tenacity with a smile but we'll talk a little bit about that but thank you for sharing and what you've done absolutely now susanna i want to ask you to share story thoughts about patients advocates and please share with us i've been thinking about how i could participate in the in this meeting and i thought that the most the most interesting thing that i can share is the change in the in the culture in the Spanish healthcare that we started like ten years ago with a project on second victims as you know the second victim is the health care professional that is involved in near me or incident or a preventable adverse event those those people that are involved in the adverse event afterwards are overwhelmed with the with the incident it it happens to nurses physicians and everybody else around when one of those things happens and in the Spanish healthcare there was no initiative for going on so we decided to ask for a grant for the to the Spanish ministry of health and we got the grant so we have to develop that we used all the information that the young Hopkins Albert Wu and Susan Scott that was i think is responsible university we used all that information and we started changing it has we have a few materials that you can find in the website that you can in Spanish and in English that people are using but i think that the most important thing in our cases that the hospitals like or the one where i work at at this point have their own protocols we have procedures when there's an adverse event we follow with we talk to the patients we talk to the families and we go on because this unfortunately as shu was saying these things happen but we had to go over them since i since my my working quality has been my major for the since i finished at the University of Michigan long time ago i thought that this was the way of putting things in practice since i was not only the quality manager saying blah blah but growing with those professionals and working with them at this point during the COVID pandemic we went again with the project and we have been giving support to all those professionals at the Spanish hospitals with a website and some materials to support them and i think that it has been really helpful for most of them so i think that the professionals involved in in the adverse events or even the near misses are something that we should keep in mind all the time susanna i just want to commend you about the issues of looking at things that don't go well and understanding how many responsibilities we have to understand to engage with patients and families their advocates and work to make medicine kinder and safer and this is work in action and thank you for your willingness to share now at this particular point i am going to turn to carol and carol if you could share with us today because you have so many observations and experiences that we need to hear about absolutely i'd be honored too i think the message i want to get through today is that making healthcare safer is possible change can happen with a single person that begins if you have the will i'm happy to say that we turned a tragedy into a mission a coalition of patient safety advocates a coalition of friends of our family and we did this because we suffered a tragedy that we couldn't believe that happened um so why we're here and why we are talking today is is because of a strange thing that happened we were busy our family traveling enjoying life having our jobs my husband ty my son nyle and i we lived a great life um for 15 years and i were really thankful for that when nyle was born he had hydrocephalus he had water on the brain and um he overcame that at six weeks we found these challenges uh we had a great neurosurgeon that you know took care of his aqueduct stenosis which meant that he had a piece of skin in the wrong place in his brain that caused hydrocephalus so he had a shunt and this very creative doctor found a way to pile in enough tubing in the shunt that he didn't have a revision for nine years so a five pound baby stretched out to the length of a 10 year old boy and because of the care that this surgeon took uh we weren't in the hospital off and on revising his work and so we overcame that and many times people will know that along with these things uh you find a way to live your life fully even though you're having neurosurgery or you're having stir business surgeries or you're having whatever you're doing we were really frequent flyers of the healthcare system we're located in california and um we did this in a way that we would always reserve energy for an emergency that we had to go take care of and then we would just live our life so for um in 2006 we had moved to the hills and nyle had a great course and we found a way to live in the country and it was five years since he had had a procedure but every year nyle went to the top children's hospital to have an MRI and a series of tests just to make sure that that growth had not grown so he has an MRI so uh this time in 2006 nyle went uh to the top hospital in orange county the top children's hospital and he had an MRI and we returned and a couple days later he had flu like symptoms and i just you know as one that's very strange let's go have this checked out so we went to the pediatric physician and i said we were just in the hospital this is in 2006 um it's just a couple of days he has flu like symptoms he's wheezing he has a hard time breathing he has a headache um the signs were very similar to COVID and at the time there was no COVID but i'm relating it to what people are feeling today and seeing today so um they took a strep test they said no don't have strep throat and they wrote out a prescription and handed it to me it said go get the prescription for this antibiotic and he should be fine uh little did i know that when i was sitting in that pharmacy um for two hours waiting for a useless prescription that that would be the last time i would be in public with my son um this is now april 15th and uh 2006 and nyle was getting worse he was having a hard time breathing so we rushed him down to the hospital and where it took uh almost 15 hours to finally get him admitted to finally give him the first drops of antibiotics and the delay the delay the delay even with the films that showed he was having necrotizing pneumonia the delay the delay in antibiotics the delay of treatment caused my son to die we could not believe this we could not believe the day after easter in 2006 that our son was not going to be coming home with us and um it was the most horrific day of our lives and three days later we received call from the physician on charge and he said well we got a test back because we took a MRSA test um and we got a test back and your son had had MRSA methicillin resistant stapococcus aureus and i said what is that and they said oh it's it's a staff infection he had a staff infection and and that's that's all we could say we don't know anything else so uh in shock and and not knowing what to do i went to google and i typed in methicillin resistant stapococcus aureus and two things popped up sephad rapid test two hours results in two hours and the stock hospital infection campaign from a woman by the name of lisa mcgifford and she worked for the consumer union which was a part of consumer reports they not only tested toasters but they also tested the quality of hospitals and reported on it and this was a campaign stop hospital infections to make a long story short we got very um uh very engaged with the stop hospital infection campaign and lisa mcgifford began to teach me and educate me and provide a phd um in the area of what is really going on in hospitals that we're not aware of and what we learned was we were unaware of the war of preventable hospital acquired infections raging in our hospitals in the u.s and throughout the world we were unaware of the number of people that died from preventable infections and in nyle's case we were unaware of the number of people that died from sepsis because what happened was the same thing that happens to over 250 000 americans every year and that is uh the physicians did not take nyle's signs of sepsis seriously and because of the delay the delay the delay and the lack of antibiotic proper antibiotic treatment nyle's life ended so this was horrific sue and every other mother in the world especially the people today in ukraine who are losing their the lives of their loved ones and they realize what it's like to be in a war that's what we felt like when we finally i made nine appointments at the cdc i said i need to know why why are you not educating the public and what i want to share is that the success of new information getting out in the public is huge we work very closely with the cdc because we started to take other stories and share their stories with the cdc and urge them to please educate the public we were unaware we were unprepared so today um after forming an organization called nyle's project we are a public health patient safety awareness organization we do public outreach concerts and events to educate the public on real preventable measures we get the information from the scientists we uh found out why we had no idea of how many people go into hospitals and get these infections so we said let's find out what state has laws that require hospitals to report their infection rate let's find out what states require screening at the door so that you can properly test people as they come in to find out do they have mersa or do they have other infectious diseases will they be spreading it to uh our patients will they be spreading it to our healthcare workers so we uh implemented and we work diligently on legislation for the state of california that today saves lives because of awareness and in the state of california all hospitals have to report their infection rate um these are positive things that happen when a single person or family finds the experts gets the science and finds a way to make change for other people and i just want to make sure there's so many things that we've done and so many things that others are doing today the patient safety movement foundation has been a wonderful organization to work with because they do respect and honor the patients and we have a place at the table which is how we need to change this in our world to make sure that families and those who have been affected by preventable medical harm have a seat at the table harrell thank you for sharing this notion about the need for a seat at the table and they don't always come easy but one of the things that i want those in attendance either today or who viewed this later to pause and think about of these stories that we've heard what are the two or three things that were most important a lot of people have great ideas and we want to be thankful for those great ideas but to take a great idea and to promote change requires more than just a good idea so when you think back about michael's presentation your comments susanna's comments carol's comments what two or three things really stand out to you that make a difference that you'd have those who are thinking about how can i help right you know i think that especially from you know my personal experience in engaging in innovation and change in patient safety with the healthcare system you know you mentioned that you know we were tenacious the moms were tenacious and we stuck with it and and we we were moms on admission but you know what really mattered most were the humble leaders that were willing to listen to us and to partner with us and step into a new paradigm where it just wasn't about science and policy and academia they recognized that we weren't going to get to safety without the passion the knowledge the experience experience and advocacy of the patient community so i think that was the biggest lever that i saw and i continued to see 22 years later are individuals willing to step into this new paradigm they're courageous they're humble they're forward thinking they don't they're not too concerned about what their peers think you know they're they're out in front you know making change so i think that was one one of the biggest uh facilitators let's say of engaging with patients in innovation so i like that a lot professionals real professionals right self-reflective they pause and ask am i a part of the problem am i a part of the solution and have i really thought about it and who are the voices out there that i need to listen to that's right who what else would you add yeah and you can i just say something else um you know it was um it was an interesting journey to to work with healthcare professionals because we moms when we approach them we recognize that a lot of the clinicians when we talked about change only saw the barriers they talked about oh no we can't do that we can't do that we can't work with the joint commission we can't call cd cdc and we're like yes you can and and so what we saw as non-professionals we didn't know the barriers in the healthcare system we only saw opportunities right and so that's what i hope viewers of this session recognize yes there are barriers out there but you can overcome those barriers when you when you band together under a mission and a purpose that's really meaningful and it is that collaboration susanna what would you add what have you heard in this session today from any of these presentations that strike you is a key to success i think that the trick i think it was susanna who said that it was tenants because you once you start you have to keep going whatever happens whatever you talk to whomever would find all the barriers no you should keep going you have your objective and keep going that means that you need a multi-disciplinary team and in that team we want patients and we want patients at book advocate at book it's all sorry and we we as i thought it was carol who said that we have the will we have it but then now we need to put it in practice and to sit all of them at the same table when i meet with the with patients and with their families in different meetings or doing surveys at the hospital or conducting studies people is willing to help out us health professionals so let's start talking and making changing the culture that's like what i think we need susanna this notion of collaboration though is sometimes frightening yes and one of the things that i see modeled in this group what i heard on michael's video is and that's why i go back to michael's humor it's a frightening thing and when collaboration among a multidisciplinary group has not been the common getting people to relax enough that they listen and reflect is a key and i've heard that with all of you it does take tenacity but it takes a sense of humor it takes a vision and all of you have modeled that carol what else would you add is is one of your keys to success well i think um you need to make it personal you need to always connect with those who have the connections and you need to make it personal i'll give you an example so when we started to work on this legislation i called governor jerry brown at the time in california the governor of california and i said i need to talk to the head of who is running the health department here and they put me in touch with the head of the person running the health department and uh we made an appointment she called and she said you know my aid is going to be able to get more things done for you you need to talk to jennifer so when i talked to jennifer she uh i'll have to correct that it was governor schwarzenegger who was the governor at the time and she was reporting directly to the governor and i said what i need to do is i need to find a senator that has actually had governor schwarzenegger signed a bill into law that will find hospitals for mistakes or find a hospital for something and they said there's only one her name is elaine and um there's only one and she said but i will tell you right now you're never going to get this through you're never going to get public reporting it's never going to happen i go okay that's right i'll just give elaine all quest call and i kept in touch with that jennifer we found out that niles birthday was the same birthday we got together and had ice cream on their birthday we i kept in touch when i saw things going crazy so make it personal and timing timing was of the essence timing was there were big problems going on in california with health care um at the time the governor's medical his wife's medical records have been breached and he was not happy about that so the timing was perfect to start making sure that hospitals were being held accountable for things that should not happen so i think make it personal and timing carol thank you for that briefly but i do not want to miss this opportunity who heard something in this last round that you just want to call out or emphasize uh raise your hand we'll do it in that informal non-electronic way did you hear anything that you would like to call out again so i see your hand moving no i was just moving ahead i know i'm just trying to think i think everybody's brought up such good points um and that you know i i think what i like carol and susan i think brought this up is the message to those who are viewing this this session this panel is um you know really to acknowledge that again science and technical expertise and academia alone cannot really solve our patient safety problem that it must engage the lived experience the knowledge the wisdom the passion the advocacy of the patient communities and so i want listeners to think about how can they invite us to their boardrooms to their committees to their guideline development table to their you know all of their patient safety improvement efforts to really accelerate and transform patient safety so thank you for that and i saw susanna's hand susanna what would you add i think i think that uh professionals if the professionals involved but also the patients and their families involved need to be heard and understood of what was going on and to participate in the definition of the measures to be implemented after to prevent it happen again i think that that is probably the the key uh to to um change uh things because they would see that after an adverse event things change so that it won't happen again and they would be involved next time more and more involved you know susanna it is so important when i sat as a family member in a patient's room who had had some neat transplants and i suddenly realized what a terrible job we did in washing our dang hands it is that passion to improve things that we see so i want to remind those who are listening today it's not it the policy works incredibly important collaboration is incredibly important sitting in a patient's room and making observations is incredibly important and we need to be actively engaged in those things now we have just a few minutes left but i want us to leave today thinking about what is it what is it that i can do to make medicine kinder and safer from the role of a patient advocate and so carol i'm going to start with you first this time round because i have uh had you uh is the third each time we've gone around carol what would you it is we are sort of beginning to sort of we want to gain momentum we want others to say i've got a role here what would you have them think about is they uh ponder and reflect on this session today i would say fight for transparency fight to see the numbers you want to know how many people were harmed in our hospital today or this year or this month how can we improve the voices from the people that work in these systems the voices that have a soul to change what they see and they do not agree with they need to be brave be brave enough to stand up and speak out for every patient and every healthcare worker because if there are things that are happening and there are they need to be fixed don't count somebody else to do it you need to stand up and do it no matter what carol i really like that i really like that and and this i think is one of the reasons that i was so struck by your comments today i'm struck by michael's message because you're going to have tenacity you're going to go after these things because they're important but we can do them in socially appropriate ways that are far more effective and those things make a difference susannah what would you add as we sort of think about messages that we would want to be sure that those listing will contemplate and reflect on i think i i go i go back to teamwork to the discipline multidisciplinary teams and i think it was one of your prior presidents who said yes we can so yes we can make changes in our healthcare and no matter what it happens in any country anywhere patients and their advocates should participate in the definitions in or under those measures implemented to prevent it to happen again susannah i feel so strongly about this and this links back to sus comments you know the the the commitment here has got to be to make medicine kinder and safer but we do that by making it be more respectful to the real participants patients and families who see and observe things the combination of data carols point with stories to make it real carols point these things are required to make a difference and to influence and to influence and influence so what would you add i would go back to something i already said but i would strengthen humility i really think the healthcare system our leaders our clinicians need to invite you know the patient community in our knowledge and have the humility to accept that maybe we've got some solutions that they haven't thought of and um so that's that's you know be humble and learn from us learn from patients i mean there is so much that happens that we know that we experience the outcomes that we have that simply don't get captured so engage in developing mechanisms and reporting uh tools and other ways that our voice can get heard because right now the patient voice is still quite absent in and really improvement efforts the last thing i would say is um be a polyana um you know during big i love the the saying by dania bernum make no little plans for they have no magic to stir men's blood don't think small think big if a polyana from Boise Idaho can be part of guideline develops and changes and um new standards then others certainly can thank you for that you know it is this notion that as people sit and reflect on this session there is so much to be done wherever we have humans engaged in any kinds of activities we have opportunities uh as i say to do more better i know that's not grammatically correct but we do and we don't do it as long as we sit around just pointing out problems the issue is it's about building solutions in collaboration because we do have systems that make it hard for people to do the right thing it makes it hard for patients and families coming into our health systems to get the care they need real leaders are committed to fixing that but real leaders also understand that the human element is important and i talk all the time about accountable professionals because we do have accountability but that accountability should start with listening and that doesn't occur sue without humility and so those things go together and i think are great drivers of our safety now we have about 30 seconds of peace left carol in 30 seconds what else would you like to share today susanna get ready and sue you'll get the last word get involved whoever you are whatever position you have find a way to get on a committee or get on a hai advisory committee or wherever you are get a vote and a voice and make it focused on the patients because patient safety means patients are going to live and thrive and so will you so get on a committee or a board or a panel and make your voice heard carol thank you susanna what would you add 30 seconds the culture changes if we it happens if we have the will and if we sit at the same table go that's right and susanna i'm going to leave 15 seconds of silence here which we never do because i want people to think about that and then sue but we're gonna close with something that carol opened with and that was the term hope um and believing you know starting out on your projects believing you will be successful you know when we moms change the standard of care for jaundice management a reporter said to me mr sheridan i'll bet you and the other moms never imagined that you would change the standard of care and jaundice management i said oh yes we did so hope you know let us all join this revolution and there's this great saying that you know let's start this revolution of hope and not despair because hope is a really powerful mechanism and i hate to say that sometimes it takes a while to see it the results of it and i do not want to miss the length of time that all of our panelists have been engaged in these efforts and even though they don't come easy it's especially why we have to all get engaged and stay engaged and so sue is the work finished yet no oh gosh you're still you're still revising carol is the work still is it finished yet no no is it finished the answers no never so let's leave this session today and get back to work that's right sounds good thank everyone and go out and do good work make medicine kinder and safer at kaiser permanente in northern california we are committed to save patient care our patients come to us with a sacred trust that will do no harm to deliver on safety we must be resilient and reliable no matter the circumstances that is what highly reliable organizations do they are successful because they hired a fit anticipate mistakes and error proof their environment and design all of their systems and processes incorporating these five principles into their operations they have a preoccupation with failure sensitivity to operations a reluctance to simplify commitment to resilience and deference to expertise in our organization we have been intentionally designing for reliability and continue to refine our leadership capability and error proofing skills to improve quality and safety with our preoccupation with failure we have established organizational structures and ongoing monitoring systems really enhancing our ability to detect emerging problems or drift from strong performance allowing us to lean in quickly to course correct before conditions exacerbate we've incorporated visual boards daily management systems and leadership routines that build in daily sensitivity to operations so leadership can support mitigate as well as reward safety activities and behaviors we are reluctant to simplify the answers to why things happen and are fostering what we call a questioning attitude as well as enhanced our safety event evaluation systems to assure that we dig deep to understand the root causal factors and then mitigate incorporating human factor science and the highest levels of our hierarchy of controls into the design of interventions that make it easy to do the right thing and prevent harm our commitment to resilience assures that we create standard work protocols guidelines and policies that when strictly adopted assure we have consistent safe and quality outcomes we also recognize that two errors human and are currently deploying a common set of error proofing and peer coaching tools that will prevent cognitive error and arm our staff with a common language to respectfully coach a colleague to do the right thing most importantly we embrace deference to expertise by deferring to those most knowledgeable when it comes to finding and fixing our problems and including those that are closest to the work in the identification and solution of issues our patients and family members play an important role in this process we invite them to participate in event investigations shift nurse knowledge exchanges and in designing system change or novel care pathways these HRO principles combined create a collective mindfulness around quality and safety highly reliable organizations are in a constant state of anticipation rather than reaction and they position themselves with the ability to quickly contain and minimize risk before things exacerbate we are proud to be recognized by the patient safety movement foundation for high reliability however we recognize that high reliability is not a destination but rather a continuous journey of improvement and optimized safety