 partnership with the University of Texas Health Science Center and so I want to make sure that everyone receives the credits and follows the process in order to be able to receive your CEs. If you are getting nursing credits or social work credits you do need to make sure that you've checked in with the UT Health Science Center table in the front. They have a blue form that you must have. If you do not have a blue form you are not checked in. If you checked in last night or yesterday for the pre-conference workshops you must check in again today because we're doing the CEUs by day so please make sure they are going to be here until about nine o'clock. If you've not checked in by nine o'clock then you're not going to be able to get those CE credits so please make sure that if you have not done that you can get up from your seat and do that now because we want to make sure that you have those credits. Also if you are receiving any CHES credits if you are applying for the CHES credit please make sure that you are visiting with Caroline Bergeron. She is at the registration desk. There is a check-in process for that and you will be given a link to a survey or excuse me a feedback survey that will be emailed to you this afternoon. Those certificates are going to be emailed to you so once you complete the evaluation form and the survey you'll be given your CHES certificate for credit. Now Brittany Langevin who is the coordinator for all of this event she is going to be providing each and every one of you a certificate of attendance so if you are here with a group and you need to have verification or certification that you were here both days Brittany is going to be emailing all of the people that have checked in with registration with the eversion of your certificate of attendance. If you do not have email and you prefer to have a hard copy please make sure that you get with her so she can mail it to you. Okay so those were some quick business items that are super important for you and I wanted to make sure that everyone again had that information and next I just want to give a quick thanks before I pass it over to my leader Dr. Robert Furrier. I want to give a quick thanks to all of you guys who joined us yesterday for the pre-conference workshops. They were very very enlightening and we definitely had a good time last night so I want to thank also our pre-conference workshop presenters that included Health Literacy 101 done by Dr. Oralia Basaldua Health Insurance Literacy and that was a gift to the Health Literacy Conference by Arc of San Antonio, the Alamo Area Resource Center of San Antonio and then we had a great presentation by Dr. Melissa Valerio and developing program materials for communities. So again thank you so much for the pre-conference presenters that took their time to be able to give us that education yesterday. We had a great evening yesterday after the pre-conference activities. We had a wonderful reception, got to visit with some of our exhibitors and had some students here that presented their posters. We will have a poster session later on this afternoon around lunchtime so for those of you who were not able to stay with us last night all of those posters are going to be on exhibit this afternoon during lunch and so we ask you to join us for desserts and and some time to visit on those posters. Last night we also had an opportunity to honor some very forgiving individuals and that's for our Health Literacy Hero Awards that we give annually and later in the agenda we're going to talk a little bit about what the Health Literacy Hero Award is and why we give it who've been some previous honorees and that'll be presented by Dr. Flores who is the chair of the San Antonio Health Literacy Conference. Our panel last night was very very engaging. This was really more of a community dialogue that we had and we had some three very engaged community partners and community organizations that included Krista Santa Rosa, the YMCA of Greater San Antonio and the San Antonio Fire Department. Again if you were not able to be with us last night for the conversation these three individuals are going to be putting are going to be providing a longer discussion in the deeper dive sessions this afternoon and so we'll give you guys a little more information about each of those but they will actually be discussing all of their program in more detail and answering specific questions about some of the techniques that they're using some of the outreach methods that they're using in community and really be able to provide you a one-on-one on the successes and maybe some of the obstacles that they faced as they were able to as if they were trying to get those programs underway. So with that I am going to welcome Dr. Robert Ferrer he is the Health Collaboratives Board Chair and he's gonna say a few words and recognize a couple other folks. Thank You Elizabeth and I want to say Elizabeth is a force and maybe the force behind the health collaborative through all the the different board members in the years and and this conference happens to a large extent because of the vision that she's had for many many years on the importance of health literacy and so I just want to take a minute to recognize not only Elizabeth but the staff this thing doesn't put itself on who have been working really really hard to make this happen over the weeks and months before this morning so join me. So welcome to the 12th annual conference 12th is kind of a big number in that in the health literacy world it's it's been an emerging concept that doesn't go back too many decades and so we've been at it a long time and we still have a long way to go which is why we're all here this morning ready to learn and engage and open our minds to what needs to be done. So in a few minutes we're going to start hearing about really state of the art thinking from our speakers and in our workshops but as Elizabeth said we are all here by virtue of some very generous support and so I want to take a minute to acknowledge the people who have done that and the organizations. Bear County Department of Community Resources first of all has been a big sponsor for us over the years they underwrote 46 people to attend this year which is quite a few and also I would say is a is a good symptom of of city government county government that that knows what the underlying problems are and what we need to do to address them so I take that as a very good sign. Likewise the city of San Antonio Metropolitan Health District is here not only with support but also with programming as you'll see this afternoon and they underwrote quite a few sponsorships so we thank them we thank Community First Health Plan who has been year after year a supporter of the meeting and with annual gifts as well as sponsorships. And then our health systems Christa Santa Rosa University Health System the Health Science Center my employer and its Department of Community Engagement particularly we thank them UT Health the School of Public Health who had Melissa Valerio come and put on a great workshop last night and then other friends of health literacy Aetna Methodist Health Care Ministries head start and they're all one of the things that these organizations have done that's very important is to provide scholarships for people who might not otherwise be able to attend the meeting often from organizations with small budgets but big missions so we thank them very much for doing that so thank you to our sponsors. So I think you know as I think about the meeting one of the nice things is to be able to see the evolution over the years from talking about health literacy in sort of an abstract way to really digging down to the what we need to do on the ground every day to make it happen for the people we serve and our organizations and I think as I wasn't I wasn't here last night but I heard that one of the presentations focused a lot on the systems part of health literacy not only do we have to lift up the people we serve and improve their health literacy but we need to balance and recalibrate what we think of as the demands that we put on people in our organizations and our systems right so health literacy lives in a specific place it's the it's the balance between what we ask of people in terms of their abilities and the people's abilities themselves so you can raise their abilities or you can lower the ask and both are equally important and often in our especially in our health care organizations we have made the demands very very high often impenetrable even to people with college educations and so I think we finally gotten that message and and we're on it and working on it slowly but systems change slowly. Okay so to me the the central part of health literacy is it helps us address what I think is the most fundamental predictor of health and attribute that people need for health and it's non-traditional especially maybe coming from a physician and that's empowerment so to the extent that people are empowered in their lives to take control of their health to be empowered in their communities to help the community raise itself up that's where health lives and that's that's what we're talking about and just like not health literacy plain old health literacy was viewed for you know for centuries as the key to empowering people to allow them to be citizens and participants in their in their own nations health literacy now is what we need to think about as the way to empower people to take command of their health and I just in thinking about that I just want to contrast two definitions of health literacy one is the one that we use in the in the United States which is the degree and you probably heard this last night and you'll hear it again today if you didn't already the degree to which individuals have the capacity to obtain process and understand basic health information and services needed to make appropriate health decisions so that's one vision and then here's the shorter vision that they use in Europe the ability of citizens to make sound decisions concerning health and daily life at home at work and health care in the marketplace and in the political arena so those last two in the marketplace and in the political arena we kind of leave out in the United States for reasons of the way we have conversations about you know what's important in public life but I think we need to bring those back in and think hard about about how we frame those issues and and be realistic and even a little bit courageous and how we do that because I think the fact that you know if you look at health literacy it's it's not completely connected with literacy so when when they do surveys and studies about health literacy they find that even well educated people often have gaps in their health literacy and so we can't assume that because someone's a college graduate or even has a PhD that they're they're very literate and that tells me that on a very fundamental level as we raise people to be citizens in our society we're missing something we're failing them if if you can't get through 14 years of education and you know six four or six years of higher education without having absorbed some very important things about health literacy then then our educational systems and our public dialogues just aren't doing it for us and so we need to we need to think hard about what's missing and how to get there I'll say that we also we need to be humble about the task and realize that the things that we don't know are really sabotaging us every day so I'll just give one small example for the last five years in our clinic at the at the Robert B. Green we've had a which which is a safety net practice as many of you know we've had some money from Medicaid 1115 waiver to deliver primary care in a way different than we did historically and what we did we hired we hired a dozen community health workers who go to people's homes and learn a lot more than we would know through 15-minute office visits about people's real lives and the struggles they face and we hired some extra staff within the clinic to help people navigate are very complicated and often frustrating health system to help them be better better consumers and better patients in the system and as people got to trust us in ways in new ways that it's that they never trusted us before because now we're in their homes and we were communicating with them in a new ways one of the things they they came to us with was their mail they would bring their mail to us and say I get all this mail I can't I can't read it I can't understand it can you interpret it for me and a lot of it was from us it was bills and explanation of benefit statements and you know referrals and we're generating all this stuff and people were just really unable to process it so we have all these we have all these highfalutin ideas about what we should do and then what people need is someone to read their mail right and so if we if we think about the task we need to we need to think hard about what the fundamentals are are we getting those right or not and my my belief and my observations are that in many cases we're not and it needs a needs a rethinking of how we go about what we do so the other thing I want to talk about is there's the forces of literacy which are in this room and represented in a lot of places in the United States and then there are the forces of what I've come to call anti literacy which is the people who want to hide facts about food about products about different things and they try very hard to make it hard to get information even and if you look at if you look at very basic things like a food label you know there's a food label looks like it's designed to help people understand what's in their food or does it not and I would argue hard that it's it's designed in a fundamental way to make it very hard to understand whether a particular food is good for you or not and I'll just give I'll just give one tiny example from my daily life it's a little silly but when I you know as you can as you can tell from look at me I'm kind of a string bean I don't count calories but I still like to read labels and understand if what I'm eating is is healthy for me or not there's a there's a little snack bar I like it's called a Bobo bar I think they're tasty and after I take a bike ride I like to have one and a little while back I said well how many calories are in this thing now the package is designed so when you look at the label the calorie count is carefully hidden under a fold so you can't just pick it up and look at it you have to actually do some engineering of the plastic with your hands before you can get the calorie count but underneath that underneath that fold in a bar that's about that big you learn that there's two servings in the bar and if you eat both servings you get 350 calories now I can you know if I had to bet I would say that not one person in 10,000 eats half the bar because they something that big is looks like one serving but it's actually two servings and a lot of food labels are like that so and again the food labels are like that because of interests right that are that are not always supportive of the interests of the people and understanding what's in their food so we need to at a with the European definition of health literacy that talks about the market and what we do together as a community to lift ourselves up I think we need to be much more mindful about framing the goals of health literacy in that way and then I'm just going to close with one other idea and it comes on the the heels of an activity we had at the the health collaborative which is the big mental health conference and you know if you look at not why people die but why people suffer in the world mental health is actually the top cause and we don't we don't we don't know that fact I don't think it's not publicized enough we don't organize ourselves enough to do that but I think about health literacy and and as I you know mental health seems to be almost absent from that we talk a lot about people understanding food and understanding physical activity and we talk almost nothing about health literacy is in regard to mental health and so I would I would challenge us to make reading a mood label to be able to look at yourself and what's happening to you and look at your loved ones and your friends and the people around you and to be able to understand their issues and to to help you know call out for help when it's necessary and to know the right kind of help and where to seek it I think that mood literacy is just important as as food literacy so that I'll throw that out as a challenge to the the folks in this room and get us thinking about that so that's it I hope I think we've I think we've arranged a very instructive day for you and I'm very happy that we have the support to do it and that Liz and the staff have pulled it off again so let's have at it thank you okay but thank you so much Bob that was definitely we're all about challenging ourselves today and it's one of the things that we learned yesterday from our panel discussion there was a lot of different thoughts that were really put together by the panel but then there were a lot of good questions from the audience that kind of really I think triggered a couple of challenges even within ourselves when we start thinking about health literacy and I'm excited today because Dr. Zarkadolas is going to be providing us with a wonderful keynote and she's going to be bring a message a little out of the norm I think from some of the conversations that we usually have around health literacy so excited for that just a quick teaser to let you know I want to give a quick quick thanks to Methodist Healthcare Ministries and actually also our friends that now cast SA so see those people right over there along with our friends at Bear Audio thank you to them because they are providing us all of this wonderful resource Bear Audio has been a huge supporter of this conference and have given so much in kind as well to us but now cast actually contacted us last week and said hey would you guys like to have this conference live streamed for free and we said of course we are over the amount that we generally should have at these conferences so La Quinta the staff and our friends at La Quinta really did an extraordinary job of really being able to get us all of the space the food and everything has just been amazing and you know again now cast is going to be able to provide this live stream for those people that were not able to come to the conference so we have friends at home or at the office that had to stay behind because they couldn't get away or they didn't have funding to be able to come we're going to be putting up the live stream link for you we are on social media today so we encourage you to be social both here and also online just in a way to be able to increase awareness about the topics today but again challenge ourselves and then challenge of course our community to think just a little differently about how we how we we talk about health literacy so I'm going to bring to to the stage my co-chair of the San Antonio health literacy initiative Dr. Bertha Flores Dr. Flores and she's going to be providing us just an overview of the of the awards that were provided yesterday but before she does that I want to just give a quick take a quick moment to let you know that in the past the these awards have been presented to our founding members are the founders of the San Antonio health literacy initiative at its core and that has been organizations or just thought leaders that have really taken this conversation 13 years 14 years and really have worked on a very volunteer basis most of this conversation at the time when they began was not a part of any kind of work plan or business plan it wasn't even a conversation that possibly quote unquote would be funded through any specific title or project many of the founders that we have here today still with us continue to look for ways to be able to encourage the volunteerism behind a lot of this work and so the nominees that were presented last night are really a part of this conversation I'll tell you a little bit for those of you that don't know sort of the relationship of the health collaborative and the San Antonio health literacy initiative the health collaborative itself is a 501c3 nonprofit we've been in service to community since 1997 informally and formally in 2000 the the core of our work in the mission behind behind all of our service work is to increase the health status of community through collaborative means we are a very small staff and we have wonderful wonderful leadership on our board of directors and in your packets you actually have a page that shows all of who is on board with the health collaborative in its leadership but one of the main things that we do is we complete a community health needs assessment that is a snapshot of where we are on health issues we then work in partnership with San Antonio mental health department to do the community health improvement plan and very recently our board has taken a step forward to also look at innovative financing models in order to be able to sustain efforts like what we have today the health collaborative itself does a small portion of programming again in partnership with community but more so and our biggest investment really is in coalition building it really is in supporting collaborative coming together and really learning from each other and so for that the San Antonio health literacy initiative at the time this volunteer group back in 2008 suggested or requested to become to come under the health collaborative not as another nonprofit but actually to continue the mission of their work and the spirit of volunteerism so the health board of the board of directors decided that this would definitely be in mission with with with the collaborative and so we decided to take them under I guess you could say under the umbrella the health collaborative actually provides support to 10 community coalitions the San Antonio health literacy initiative is one of them and it's probably our strongest because we realize that health literacy isn't everything that we do so we support an immunizations collaborative a healthy a healthy eating active living coalition a mental health youth mental health coalition faith based leaders coalition we also have a coalition for our LGBTQ families and encouraging and increasing safe space so those are just a few examples but again health literacy is so important to us because it is integrated into anything and everything that we do and so for that I want to say thank you to our board of directors again for having the vision and really placing so much investment in this particular coalition and and collaborative work. As I mentioned before the San Antonio health literacy initiative in itself has people that come together every month that have this vision and through their efforts all of the program that you see here today was organized and planned and I have to say thank you to Kate Martin to Dr. Melissa Dr. Valerio for allowing us to have Kate for so long because really she has been a huge form of support for all of this planning process. Dr. Flores and Dr. Lee setley Alvazquez are the co-chairs and so I thank them for their leadership as well. With the health literacy hero what one of the things that the committee decided is that we really wanted to recognize leadership locally and not in leadership in the sense that we have researchers we have educators but we also have people in the community that are doing this purely out of their own passion and so going forward the health literacy group has decided to continue the health literacy hero awards but we're going to do them a little differently. We are going to start publishing a nomination packet to the entire community and there are going to be four different categories. We awarded three of the categories last night and you'll learn a little bit more about them but it's really in the four award categories for outstanding achievement in health literacy and the awards may be up for any work to improve health literacy including programs, research, published materials, websites or even more. So this is all encompassing when we talk about what we're doing in community. Our champion for change is someone who is increasing awareness and health literacy through advocacy, outreach and education in the community. We have an award for innovative programs and that is to include activities, programs that demonstrate innovative, workable and effective solutions to limited health literacy. Published materials are is an award for anyone who has written materials that continue to effectively communicate effective communication with those with limited health literacy and it also includes websites and then of course research. These are studies using well defined methodologies that further illustrate the relationship of literacy skills to health outcomes, cost and disparities and or present evidence of effective interventions. So those are the four new categories and today I'm going to pass the mic over to our co-chair so they can tell you a little bit about the honorees that we had last night and in your program you also have a description of the awardees. Good morning, I'm Lisa Vasquez. Thank you so much for being here. We're really excited about our honorees and we did have them come up yesterday evening but we'd like them to do the same today so that we can share all of their work with you. So as Liz mentioned, this is an award that we're very excited about because it really demonstrates the leadership in the community when it comes to health literacy. So just to kind of summarize again the three categories, the one is champion for change and Dr. Flores will give the person who got that award. So the person that received the champion for change award was Ms. Mary Kate Martin from the UT School of Public Health, the San Antonio Regional Campus. So if you please join me in congratulating her for her award. Next award is mentioned was the innovative programs demonstrating effective solutions in the community. And the person that received the award was Katherine Beltmonte. She's a patient navigator and she has created a chemotherapy symptom tracker and now she's translating that into Spanish. So she's really doing a wonderful job in the community. Please again help me congratulate her once more. If you can stand once we call your name that'd be great so they can see you. The next and final award was for published materials and the awardees were. And the awardees were Louza Maria Castillo and David Corera. Are they here today so we can congratulate you again? Okay. From University Hospital. Congratulations. Congratulations. Thank you. Thank you. Dr. Flores and Dr. Vazquez. Okay. Well now we're on to our program. So I'm going to make a final reminder because I was just passed a note. Again if you are receiving continuing education credits for nursing, social work or CHES, please make sure that you have signed in at the front desk and that you are picking up the appropriate forms in order to be able to get sure see any certificate this afternoon. So I'm going to direct us to our conference booklet and I want to just remind everyone we have plenty of coffee and things in the back. Our next presenter is our keynote and that is Dr. Christine Zarkadolas. She is a social linguist and internationally respected expert in health literacy and public engagement with health and science. As a social linguist and educator, Dr. Zarkadolas focuses on analyzing and closing the information gap between expert knowledge and public understanding of health and safety. Ms. Zarkadolas is the lead author of advancing health literacy, a framework for understanding and action. And today she's going to be bringing again a presentation that is a little bit probably different than what we've heard before but very much along the lines of what we hear in community and our panel last night and even some of the messages that we heard this morning from Dr. Ferrer. So please help me welcome Dr. Christine Zarkadolas. Thank you Elizabeth, Penny, the collaborative, the hotel that found me a toothbrush this morning, all those good things. Now really the hotel staff is really phenomenal here. Just as a follow-up on Robert's discussion, I was reading this because back in New York we don't have this bottle and it's really pretty and I wish I could fit it in my suitcase. But then I tried to read the back just to get a sense, well gee this must be really special water, right? Well it's 11% hydrogenated and 89% oxygenated so I figured if we leave the cap off is it just water again or if we stir our street water that's in our cups, is that hydrogenated, oxygenated? I'm a pretty smart lady but I don't have the literacy. And that's my point and I think that's the point the collaborative is making over and over again. What's the use of talking about literacy and health literacy if it doesn't, can you hear me? Okay, if it doesn't play out in our lives. So that's what I'm going to be talking about today, how I've been working health literacy since the early 70s. I didn't know it at the time but I was working in health literacy and I want to sort of trace for you where it's been, why I still don't understand what health literacy is, but the things that captivate me. So I hope that's somewhat interesting as we go along. Let me tell you just very quickly how I'd like to do this. I was going to do a much longer presentation but I think we need to open this up at the end for questions, comments and things so I'm going to speed through some things with the help of the wizard brief back there. Very quickly my path to all this had a few, I don't know on the road to Damascus moments I guess, but I was an English major and you know going to do the classics and grow my hair long and then the late 60s came along and a professor of mine while I was temping at a teamsters agency in New York called and said why don't you come back up to Providence, there's a real need at the school for the deaf and I said okay I don't sign very well. I signed a little because my mother was one of the children who grew up in the area of chronic otitis media before antibiotics so she had already had a radical mastoidectomy and had no hearing in one ear and we thought she'd lose hearing in the other and so I'd learn sign language but that's about it. Anyway I went for the summer to work with deaf kids who are just a few years younger than me who only signed and I stayed essentially a decade and what I learned in that part of my journey is that all of these young people who had in America been trained to be carpenters at best they obviously were deaf and dumb or mute had a very rich language it just happened not to be written English and that led me into the field of linguistics and I was surrounded because of a wonderfully rebellious principle from Australia we were all linguists we came from different fields but after we began in deafness we all decided we had to know more about language theory and reading and speaking and so that launched all of us back in the early 70s into different aspects of communication and I landed because of a dire family illness in health communication because I was sitting in the hospital with my paralyzed mother who had Guillain-Barre at the time and I couldn't understand anything about what the doctors were saying nor could my family and I went down to the library in the hospital and I started reading the Lancet as much as I couldn't understand it and I learned more about the need to communicate health now remember health literacy wasn't a term back in the dark ages you know we were just what is it about the language of health the language of science what is it about scientific writing that's what we were invested in at the time fast forward and so many people were working in the 70s on patient physician communication and you know it's got to be better and as my ex husband said I always have a problem for every solution so I decided that I really didn't like the solution they were coming up with which was to speak slower and easier I then started the studying public discourse and as Bob says really get into what is the public talking about who's talking with the public what is public discourse like and so I've spent the last 20 years actually working in analyzing public discourse in the areas that I'm presently working in and most committed to our mental health we in this country do not incorporate mental health into our discussion of health literacy we have no assessments of mental health literacy the Australians over 10 years ago did a national survey of their populations mental health literacy we still haven't gotten it on our radar screens and the other area I work in is complex emergency so I have a 90-year-old mother on the coast of Florida today who refused to evacuate last night and she's pretty smart so you wonder okay what is it we're doing anyhow that's me and the root was circuit is and it still continues my message is to myself are the constant ones are that we're in an ever-changing constant landscape of risk okay it's an it might have been TV it might be obesity now but it's going to be changing and so what we're looking for in a populace is for them to be as prepared for the next next risk or hazard as we are so let's just read this is supposed to have a sound effect from 2001 a space odyssey I stayed up late to try to do it it didn't work but let's go back to the 70s that I was just reflecting on and in the late 70s says he doke they were teaching reading and from there they're working with reading skills with their patients they identified low literacy skills but by the time a bunch of us had been recruited by Pfizer to work on health literacy health literacy had also been equated with reading completely I have theories about this but we don't have the time but it was reading and if you've ever used the TOEFLA it is a bastardized reading test and it is the worst kind of reading test because it's rebus tests and reading researchers in the 60s said this is not how to test reading comprehension but that's what the TOEFLA did for 20 years and I think some people are still using the TOEFLA it's a reading test and so what happened because of what we could assess at the time or what was decided we were assessing at the time most federal grants required you to administer the TOEFLA to your patient population or to your study population is that we defined health literacy through what people could not read I think there are remember Rudd at Harvard says there are 840 studies in the last 20 years telling us what people can't understand and can't read about health food labels are the painfully tortured product of this the early remedies were obviously right simple and they will come okay there are in that 840 plus studies not even a handful who have demonstrated that have demonstrated that when you improve people's reading of health information you improve their health behaviors and health outcomes that's not glorious statistics so I talk about the field in terms of a series of wardrobe malfunctions come on you know I gotta stay interested in this field when you're as old as I am so here are the malfunctions that I put out to you and hope you have some insights to share with me because I don't fly anywhere much anymore and to come out here is to learn from you and I mean that seriously back in the 80s we're doing lots of tests a slinguist that nobody really want to talk about to see if you really did clean up the language make it simple short sentences mostly controlled vocabulary that's exactly how for 20 years we've been defining what we need to do to make information more understandable to the public would that actually do what it was intended to do so we took a lot of things like you know insurance forms and things like that so on that side you have due to the fact that this drug is not on our formulary we're denying you claim for reimbursement okay typical 11th 12th word reading level multiply embedded sentence and we clean it up and we say we deny will not pay your claim we are denying your claim because this drug is not on our list of approved medications that's about fifth grade well in a series of studies we did back in the early 80s we found that across the lifespan across the education spectrum there were still a huge comprehension problems with the simple sentences because what you need to know our concepts you need to know the insurance company regulates okay this that their lists are always changing their formularies meaning lists of what they cover and not cover into greater lesser degree consumers also have to understand that they have to be they can request an appeal what that appeal process is like all of this goes into health literacy but we were still for the next 15 years just simplifying the sentences so my first border out malfunction that I get hung up on is what beyond simplification malfunction number two was a an embarrassing study that was done by my colleagues who I like very much who have dedicated their lives to this it's not because of a lack of dedication and commitment it's just the field they they studied what they read and you've seen the title in all labels I mean not the time in all labels target labels were one of the first large corporations who decided they were going to make their prescription labels readable so there would not be these barriers and they did a study they included recruited a lot of us to take part in it I didn't take part in it because I didn't believe it was going to make a difference and then they did a huge follow-up study of patients who were you know who had chronic conditions that they were following who had their prescriptions filled at target and patients in a very matched group nearby who didn't use target who had the old labels to see if the you know they looked at two things was the prescription refilled on time and did the patient say they took it as directed and what they found was no significant statistical difference between the two groups again with this malfunction we know medication taking is far more than reading the instructions it is reading the instructions for a very small percentage of the population my mother who didn't evacuate also doesn't take a lipitor every day why and she's smart lady she's got me and she's got me explaining to her in numerous understandable ways why she should take it what are the reasons for not taking it I don't think I need it I don't like taking medication every day I heard on TV you've got to watch your liver well I was on an in a meeting one day one of the leading cardiac experts in New York City and I was bemoaning the fact that my mother wasn't taking her lipitor every day he says she's eighty nine what does she have to worry about she doesn't have to take a lipitor at all so we don't take our medications if I asked you how many people have had a prescription for an antibiotic biotic that they didn't complete the entire treatment regimen eighty three percent of you likely would raise your hand you're all smart you're all health literate okay we make powerful empowering choices all the time that doesn't make us low health literate okay and so in the eighties I really kept scratching my head build them what is this health literacy thing that we're all talking about so we've already said that the test of health literacy drove our understanding of what health literacy was but then people in the early mid nineties again not from fields of health literacy anthropologists sociologists started to say well you know if we use these readability formulas that we've all been tasked with you can essentially take a sentence be prepared to die next month which is I think three point five grade and call for an appointment next month and they are of equal readability they're not semantically the same in meaning the weight of one is profound and compared Paris into the other so for the wardrobe and this is Jessica anger's work if you're interested she does a lot of great stuff like this we concluded my little cohort of antagonists that sure clear language is very good and there's no reason to write anything but clear language but it's hardly ever sufficient I mean how I don't know if you have relatives in Florida but most of last night I was watching the weather channel you know the men out there on the beach waiting to be whipped through to tell you about the hurricane you know what goggles on and everything else but the governor Florida came on and the governor's South Carolina come I said this is deadly you must leave now if you've never listened to me before listen now pleading the vast majority as far as we can tell of the populace along the coast of north Florida and South Carolina have not left that's human nature that's being able to make a decision informed it may not be the decision public health people and public safety people want you to make but to go back to the European definition of seeing human beings it is using your data to make some decisions if you weren't thinking at all and had no access to the information that's one story but if you have access and you choose to make a decision that is not what the higher ops want you to make where does that fit into our conception of health literacy think of the diabetic think of the profoundly pernicious term non-compliant okay so the world according to Chris I'm going to drink some of this very special water just such a pretty bottle in New York we'd been wondering we'd wonder whether they just put tap water in these bottles in Texas is so much more honest about it okay okay the world according to Chris it's a limited world I don't get to speak to large groups too much okay health literacy was a really unfortunate term as our board president co-president said last night um literacy to linguists and cognitive scientists and I mean I teach a whole course on literacy to graduate students and it's all about how amazing human beings are I mean the speakers that were up here before me Penny Dr. Vasquez and Dr. Freer we're all speaking at 12th to 15th grade level or higher we didn't trip over what they were doing we kept going along until we made meaning of what they were saying oh yeah okay humans do that from the age of one they never stop making meaning so that literacy which in this country smacks of reading really forever linked health understanding science understanding and reading and what do we associate with literacy illiterates exotics tribes and Namibia you know less sophisticated less natively intelligent like my deaf kids 40 years ago we also had low literacy about literacy meaning that the field really came it was a marvelously interesting field at the beginning it was educators especially ESL educators and I was doing ESL part-time in New York City and physicians a physician started saying oh my patients can't understand me they can't do this they can't do that they quickly won the field and ESL people and education was marginalized was very hard for educators to get money back in the 70s 80s and 90s to look at health literacy the money went to medical establishment those folks had no understanding of literacy that's not what they read that was not what they were trained in and that brought us down a road that I think we're trying to backpedal it the human abilities for language are enormous innate we don't teach it we learn it we're forever learning it it's generative generative is a term we use in literacy and linguistics meaning that language at whatever stage you have it allows you to learn more language allows you to make learn more things on Chomsky said furious green ideas sleep oh no something green ideas sleep furiously I'm forgetting it we don't know what that sentence means but we know it's an allowable sentence in English and we know it because we never heard it before probably will never utter it again but the thing about language is we can understand or speak sentences we've never heard before in health literacy that should mean that it's not that we have to teach people everything they need to know about diabetes but they have enough foundational information so that when they're faced with a new context a new challenge they can generate the knowledge our field does not set up like that we're trying to teach people everything they need to know all the time human beings aren't wired that way just an example from the gene for goglesos study a four year old who's never heard of a walk before given this this is a walk and then given a picture of this is to can say walks the grammar is hardwired it stays hardwired for our lifetimes now I'll get back to why this is important in a minute so we never stop learning we learn in stages of exposure recognition oh I've seen that before I've heard that before Ebola oh yeah okay comprehension oh that's something really dangerous oh that's something contagious oh that's something they don't have a vaccine for and production I want to do something about this that's our stages of acquiring concepts and language all of it generative we're using it all the time so read that for me stop laughing okay you get the point all right how'd you do that well sort of skipped around had a sense of what the text was about had the confidence that if you stuck with it you'd get somewhere and because I asked you to do it you said I better do it okay motivation let's not underestimate that the point is these are the universal strategies you do not have to spell out everything for everybody that's not how we are we forget about this with our patients and our clients universal strategy in understanding is skipping and guessing so the knowledge of linguists sociologists anthropologists human factors people usability people didn't make it into the discourse and yet people could read maps and find their way around and I've even seen in New York okay oh yes yes Priscilla Estrella people come to New York don't even at this point speak the language I've seen homeless people navigate maps I mean I'm just gonna let me see oh yeah this this is amazing to me because there's not one New Yorker doesn't know what this mean and means and yet it is a really complicated sentence okay if you see something say something I see something all the time what am I supposed to say nobody says that in New York nobody says that's not a one we also have the most comp will know San Francisco does but we have the second most complicated parking signs no one in New York goes into traffic we're saying I couldn't understand the sign doesn't happen so I call this the simplest city complex that we are in right now that we've got to figure out a way to get out of actually writing a book that's what I want to hear from you it's like okay we have simplified language if you look at the Johnstown flood at the turn of the last century and you fast forward to Katrina and you fast forward well you can fast forward through a lot of things including HIV and H1N1N Ebola we give a lot of simple information to the public and I think we have created a problem with health and science literacy not that it's not coming out of the schools in an elegant in elegant fashion I think there's a lot of problems with what's happening with schooling but I think we are the unintended consequences of some of what we're doing is setting us back so we'll talk about Zika okay but we won't engage in what people really want to talk about at least in New York is why did Puerto Rico ban the spraying that they're using in Miami because they hear that from their relatives that's weird they want to get into the deeper dive of this issue I mean the knowledge that's in this insecticide has poses serious health problems and yet we're spraying it here in this country we through our oral language use a lot I don't know why the slides are like that I'm sorry I use a lot of different analogies and we do this in spoken language all the time we're less rich in our writing for patients we seem to want to still and I'm not talking about us but I'm talking about sort of the messaging that the messaging that comes out of federal and state agencies can still be stigmatizing and to a great degree we have failed to appreciate the miraculous things that people have done with online communication technology they sort of said oh I don't have to write a perfect sense I can text and it has been grossly liberating it has been empowering and it has shown us at least if you're following but you are following apparently 93% of us are hooked up at any given time grandparents are where last year the fastest adopters of Facebook why they want to see their grandkids and their grandkids aren't going to pick up the phone they're not even going to email them anymore okay my 90 year old mother is now texting all of us all day but it used to be that the two main sources of health information that the vast majority of us went to were WebMD and Medline Plus they are now Google and YouTube I can learn how to do hand surgery on YouTube okay so with all of these millions of users some agencies like NCI have really gotten into what can we actually get the technology to do for us we started revolutions we work with I work on a project in Brazil we work with illiterate farmers on pesticide use with GPS and coordinates and you know we create educational revolutions around the world by providing people with laptops we chronicle some of the most egregious acts of murder in this country these are just some statistics and this is Pew and Pew is these are now how many years old four so the completely outdated but the trend is more and more looking for exchanging health information online the website patients like me which started if you know the site a small group of parents with children with very rare rare diseases it is now the largest health site in the world and the media mix is changing so yes young people are still well they're moving apparently my students say off of texting we're doing Instagram now and Snapchat I'm still back with find my iPhone but the point is there are more and more apps replacing the highly interactive stuff that we had to do with patients and clients you know you can track your diabetes now on an app you can scan food labels and get the information you need in your language this is the direction that much of the world is going to leap over our complexity of what we've created self-monitoring I went to a tech show and there's going to be a mirror coming out that's going a vanity mirror that's going to read your blood pressure and read your retina and tell you if you're going to die that day and all these other things that we'll be able to do in just a short I have a friend of mine who every day we comment on social media and she'll text me she does this it's gotten old now she texts me and she says well I don't have cancer today in other words if you go through everything that's happening online you can diagnose yourself pretty well my favorite is the one that you can pee on your phone and actually have you urine analysis well you don't pee on the phone you pee on a trip chip that goes in the phone but this is coming ladies and gentlemen we won't have to explain a hell of a lot but listen to me this is here and we have to I think get our patients and clients and the public ready because they're going to embrace this technology whether we do or not okay and so therefore the issues of what being online and having access to health information just in time when I need it or health insurance information just in time and we don't read our health insurance brochures and endless manuals when we first enroll we check it out when we need to use our health insurance okay low literate underserved people are just the same so if you can have an app from your health insurer and very usable technology that's going to tell you how to use it now that you know take a picture of your ankle and send it to your doctor that's what's happening except in California where the AMA there's a strong physician lobby and they said no no you can't send a picture to your doctor you have to come in for a paid visit so the issues of empowerment are as good as the tools that we create I love this Steve Jobs quote when our tools work we tend when our tools don't want we tend to blame ourselves when our tools are broken we feel broken and when somebody fixes one we feel a tiny bit more whole whether the tool is the pamphlet we're using or the electronic medical record that we're working with I think this is very true and I keep this in mind all the time in my usability lab where we actually bring patients and clients in and have them use these tools when a tool works well you can just see it in everybody's body language oh can I have this that's what we need to be creating not this if you remember that situation or if you visited China after the Olympics when they were trying to get all their signage right they actually hired a bunch of American linguists to go in and help them with their chinglish it still survives so my closing thoughts are we have identified what people cannot do cannot read cannot understand for 30 years in this field it's gotten really old it hasn't gotten us where we want to be we have neglected I think rather sorely except when you're at the ground level and you see the glint in people's lives when you see what they're capable of we have neglected the power of what people can do and are already doing in their daily lives I think we need to focus more on the underlying concepts this is what's generative not necessarily when your child is sick you you give her only one pill and it must be a child aspirin but what is dose response because that I'm not in that language but that's the concept that there is a difference in response based on the dose so these are the few experiments that led me to this chart and I'm sorry I don't have some glitzy photos here but people can follow medication labels but they can program their DVRs they can't understand treatment options but in a study I completed last year they can solve CSI Miami episodes with the hard science in the lab forensics how are they doing that they can't calculate but they're bidding on ebay and they know the sales of Macy's down pat they won't and can't access their online electronic medical record but they manage difference on Facebook that's what I mean by let's start with what people's the skills that they have and say then what on earth is wrong with the stuff we're presenting that it is so high barrier that they can't use their skills in a generative way people are powerful language users yes we have made different major differences since 1908 but some of them are the same problems and they have less to do with health literacy than civic literacy empowerment culture believing that you can make a difference I'm going to close with a little ditty and then with an appeal and a question I have a website that is manned by my people by myself and my grad students and it's called the health literacy lab and it's free there's a link later my mom said I should give you a link and promote it it's a free site where we're creating very simple animated lessons about how to write a complex sentence or how to use a visual very it's just going to hopefully be a site that tackles some of the issues in language and science that we think are important and we're actually also getting suggestions from people who subscribe so my stroke can we play this for a second to make my point better than I do it's just from the site I only study things I'm obsessed about okay we can stop that thank you so the site is full of stuff like this only a lot of it has us narrating which can be a little more boring but I hope you check it out and if you have suggestions about I'm not going to play this one because I'd like to get some talking of all kinds of lessons you think might work I have a whole bunch now I do a lot of work for the USGS there's some champions there who would really like tsunami and earthquake information maps to be more useful to the general public so I've been very involved in that so there's a lot of work on mapping I think we should be doing a lot more with things like preparedness because if people feel more prepared for natural disasters and pandemics it will translate to their ownership of their own health and we've neglected those because they're in the purview of emergency management I just wanted to take a minute to tell you about a project that I'm working on I have been working on for a number of years with a colleague of mine Charles Plackin there are no assessments of children's health literacy in this country and I figured before they start giving kids reading tests I'm going to come out with something that's different that's a test more of kids concepts about health and well-being and you know their bodies nutrition so we've been developing two series one for six eight years old one for eight to ten year olds the six to eight year old one is now ready to be reviewed by educators clinicians this is the link and apparently if you click you could you click on that bottom link you will go to the six to eight year old survey you can put in your name or not and you can see could you scroll does it let you scroll down a little yeah you'll see the items for the kids these going to be an orally presented in the kids will pick pictures and you can weigh in on whether you think this is a useful question how you think it should have been asked and there are about twenty two items for kids I would love your feedback and we're taking this very seriously we're also going to pilot tested in Brazil and in Greece I'm telling you I'm very what do we call it no anyway it's just very whatever wherever I am is what I do okay I want to stop I want to stop and just comment how does this sound to you where does that leave you in your daily work in your conceptual work anybody have some thoughts because as I say they don't let me talk about health literacy a lot anymore in this country so this is a good time for me to get some honest feedback and I'm good with honest feedback thank you very much can you turn that microphone sorry I know I don't talk very loud I'm Christina from university and actually my doctorate project is on health literacy and pediatrics so this is very interesting the line is more on how you can teach them to care for themselves rather than how health literate they are it's more geared towards can you teach a two-year-old diabetic to inject himself if mom is not available or if something happens or if you have children that have multiple medications can you teach them to understand how important those medications are to their long-term health so I really enjoyed well thank you that's I mean I'm sure you're working with psychologists and cognition cognitive people because we know a two-year-old understanding of medication or any sense of self is quite different that's a huge challenge I have to think more about it but it also would be so helpful to the world if you could at some point publish what you learn about what kids understand my colleague at Hunter A. Ignasi Clementi has written a book about children in cancer and I can send you his link because he does have chapters on children's understanding of just what is happening to their bodies especially with very invasive procedures. Thanks Christina it's a really nice thing to hear about. Anybody else have a question? Liz I was thinking maybe you can confirm if the slides are going to be posted on our website. Yes we generally provide all of the presenter slides on our website after the conference once we have final approval I think we had someone that had a question. Yes on your assessment tool on the slide is that you said oral is that an oral assessment tool or a reading assessment. Oral it's administered is orally to the kids and they have to point to the picture or talk about it. A lot of the language acquisition, language assessment tools most for the younger kids are always oral but there's something in front of them so there is a card ultimately when these are fully drawn out. There's like three pictures and they pick the one they want. So you're going back to the notion that oral communications is a stronger tool then. Well with the six year olds they're not readers they're not reading yet. With the eight to ten year olds you know we have this we'll have to see in the pilot some kids are going to be reading it with the eight to ten year old survey it's different we are going to rely on them reading but we have the issue that some kids aren't going to be reading that well so what if you're administering it orally it changes the nature but we have to administer it orally at times. So yeah but with the really young kids it's a non-reading test it's a picture test I just don't like that word. Because well because they're taking in a lot of oral language you know and what that means to them we might find that this question is perfectly clear to us orally means something different to kids and that's why we have to be doing all the pilot testing next up with kids. But first we want to hear from experts. Thanks. Hi I have a comment I'm over here. I have a eighteen and twenty year old so yes they Google and look up a lot of information but then I get the question well what does that mean. So my comment is that yes they have access to information but the comprehension is still not there or they'll go to a doctor's office and we walk out and they go well what do they mean by this what do I mean by that. So I think health literacy the real issue of advocating for yourself and speaking up for yourself is still an issue even though they have more access to information the comprehension is not there. So that was just really a commentary as the secretary for my family is what I tell my boys. Let's stay with that a minute too because what I you now see more is that. With online texting and with there are just chat rooms where people are posing questions but the danger as with any information I don't even call danger though is you're going to get some erroneous information. But the people who say well you know young people or patients shouldn't do that and shouldn't get access. How do we learn to judge the quality of information but yeah no no information sources going to be perfect or definitive. But in studies that have been done where young liver transplants Tamir Milo did these studies where they had access to because they are on very complicated post transplant medication regimens those in the test group and the questions that they posed to the physician were of a different quality because of the information they were getting in the text programs. So you know if the if the questions can be questions that get drilled down even further all the better. Yeah. Good secretary work. Yes. Josie Nava I'm a pediatric nurse and also I work in quality at Methodist Healthcare. So my question to you is what are the barriers coming back to the United States with a study as marvelous as what I just saw on the screen that you're doing in Greece. The Children's Health Literacy Assessment. Well we have to do it here. That's how we get to world domination. We have to do it. Unfortunately Brazil and Greece don't count. No it what I'm very mercenary about this. I was really troubled that for 30 years kids were ignored in this as though you know they're just like the great unwashed you know but the more I talk to my nieces and my nephews as they developed and what they would tell me about everything from food to I mean when kids go through that's four and five years old the succession with needing a bandage on everything. Their sense of their body. Well those things are so important to know and to learn and we hadn't a step if you went diving into the psychology literature or the cognition literature you could put together a puzzle of what a child is and how best to communicate and educate them but there is so little in the English speaking world about what we know about children and what concepts they have and are there the enormous health disparities and conceptual disparities that others claim they are in young kids as well. We know nothing about any of that is anybody doing any work here in their room they who've worked with little kids and what they understand about their bodies in health and the role of medications I mean there's a lot of surveys now about kids and nutrition what's a healthy food what's not a healthy food pick the protein where are the nutritionists in the room I think that's useless I just don't think that's going to win the day it didn't with adults you know talk about one of our colossal failures is you know we've readjusted down every diabetes message we could possibly have in the last 15 years we have done nothing to stem the tide in diabetes and pre-diabetes it's an uphill battle so we have to say well there are huge cultural and emotional drivers here that have nothing to do with knowing the information I do a lot of focus groups with the department of health and New York City and you know we've done a series of groups with obese New Yorkers in every borough mostly minority underserved they can all tell me how to lose weight they can all tell me about portion control they can all tell me about stepping away from the starches they can all tell me about going down to church dinners and not eating three starches that's not it's not a health literacy problem at that level emotional drivers huge overlays with your mental health with your mood with your beliefs about food with food insecurity issues I mean it goes on and on but in health literacy we keep hammering away at the only thing that we've been told to hammer away at so yeah this is going to be this is made for an English audience primarily okay you look let me know when I have to be oh there's okay there's a woman back there so another comment on with children per say if you put things in terms that they can relate to like for instance I have my daughter's epileptic and so when we started at the age of three giving her her seizure medication putting it in terms of seeing on TV what a seizure looks like and then getting her to understand that this is something that she has which surprisingly didn't take as much as I thought but using those shows I know pure flex for instance has shows that show how medical conditions can affect very young children and giving them that visual along with the tactile information of showing them what the medicine looks like how they're going to take it and things like that I think will also increase because I noticed some of the pictures on there are things that some children don't know what they are a lot of adults don't I mean the two key things we know about kids in terms of how they consume information and how they begin to store it is in narrative we all have little scripts right cognitive scripts frames that we take information in narratives help kids before they're cognitively you know once they're at five and six it's a different story but earlier if it's embedded in some narrative it helps them make the connections you know kids are telling narratives from the time there too we may not get them so that's another thing to consider the power of narrativity I'm being taken away and then we're going to go to the next speaker yeah yeah like oh sorry I'm I am loud okay my comment is just that it seems very common sense I'm right here we it seems very common sense yet we're not doing it so what does it take to make America right so that people can understand does it take protest does it take an act of Congress and also I knew if I came to Texas we'd have that perspective I just want to make a comment I really appreciate you continuously mentioning mental health because there's so many public health professionals who don't get that public that mental health does affect public health so thank you for that yeah I mean with the huge overlays between that and diabetes I mean we talk about managing diabetes not too many patients who have a concept of managing the way we do okay so those are the splits we have conceptually but the huge overlays between mental health and being able to deal with chronic conditions is already the mortality the morbidity and mortality statistics if you have a serious depression over the course of your lifetime are there so I think we we just have to say I am not going to just simplify this information about glucose because I want to as Dr. first what is your mood at any given day how does your mood relate to your ability to make choices about food huge huge just the last final question comment right here thank you so much for the speech actually I work in a group home and with people who have mental disabilities it was astonishing one time with one of the clients he has Turner's syndrome some of you might know what turn syndrome is and I was surprised he was doing this I'm pleasant behavior that usually you know I know a worker that work with him and he told me you know I'm doing that because I have Turner's syndrome so he kept doing the behavior that you know that was not you know very pleasant behavior but he kept saying I have you know Turner's syndrome this is why I'm doing this so he knows what he got but he cannot stop it I'm not sure how much he comprehend or understand that he had this syndrome means this behavior and you know she should kind of try to stop the behavior so he knows that he got something but he does not and he knows the behavior is related to this syndrome but he does not know you know how to deal with it thank you we don't know what he knows but that utterance can't be just left out there that utterance means something what could it mean or what we should be saying is a person you know a psychologist George Miller once said when you're arguing with somebody stop and say that person is right now what could they be right about when somebody says to me I have Turner's syndrome I have to say that has such import I've got to figure out what that means when that patient utter is that thank you so much Dr. Zarca delas that was that was great I selfishly will say that I'm super excited because I think the conversation today really sparked I think something I know it definitely sparked something in me as a matter of fact last night I hope they don't mind me sharing this but last night when we were having our conversation