What is Informatics? Why Should I Care?



we're going in desperately an hour ago good hello yeah take care how they were music whoops music alright man I'll give up any of your game microphone to put on nothing so when we go grabbed up and I do apologize again everybody appreciate your coming um I'm not sure how many others will come but we have several several people online I need to turn in I am will be coordinating these sessions and I'll tell you a little bit that hid to get there so the thing nearly 80 82 but feel free lot when I'm talking feel free to ask questions we're going to get a microphone to improve the audio for the people on line but can you hear me can the people on line hear me right now you just say if you can I show that Karen who written to me a little while ago is on they can probably hear me look this mess not to but yeah well there's no second okay so I walk around with putting microphone on me nobody else questions okay there could everybody hear her can you hear me okay please you know unmute yourself and answer if you can hear me online please hey this is UNC good I can hear you your camera here hi Cameron hello Zach was that Chris my student also yes it was something hi Chris performance some of my students okay good so welcome welcome to the seminar and I know I know the title of it what is informatics welcome come on in did you sign in outside good the title said was informatics and why should you care we hope that at the end of the session you'll yet and that you'll definitely get an idea of what is informatics and I hope you'll you'll see why you should care I want to tell you just a little bit about how the seminar is going to be run what we're going to do today is we're going to describe the series discuss the major domains of informatics discuss some of the key issues in those domains and then identified to some extent UAB resources that can help you in each of these areas some of the subsequent sessions will identify them in more depth and go over them go over them more basically the topics that we picked for the seminar are a set of topics that reflect some of the informatics core competencies that were part of the national efforts to define informatics competencies for clinical and translational science researchers so it's got a bit of a research focus rather than strictly clinical care focus but all of it in is really with each other so let me let me just I know two of the people online were two of my former students carry your online can you just tell us a little bit about it just give us what you do here at UAB can you hear me yep I am a course in Chester and ethical therapy of opponent okay and is there anybody else online because if I keep my slides up I can't see who's online is there anyone else maybe well uh yes and I'm hi my name is Randall Cochran I'm in the health services administration department I'm a PhD student oh good good because I I had asked them to send the announcement of this to the PhD student so I'm glad now in the room we have why don't we go round quickly we have a few people here okay I don't know can you it could be those of you online here we have someone who's a coming nurse who's nurse who works with clinical informatics with nursing informatics at all and we have Paige who it is an emergency medicine okay oh wow and you are and your basic side okay oh okay good well I am in a juicer I'm in this part I need two burner I'm in the Department of Health Services Administration and I'm with our graduate programs in health informatics and I'm also the director of the center for health informatics for patient safety and quality so going back to what we're doing today the topics reflect informatics core competencies in general for clinical and translational science researchers they're obviously in a1 one hour a week seminar they're not going to get at those competencies in depth but they're going to give you a picture of the range of areas that are considered important in that in that space and it's a little bit different our we have a couple students who are in the health informatics master's program that tends to be more clinically focused so this is a little bit of a balance to them the communication will be via email between me and the students that's why we needed to collect your names and email we will have there will be links on the CCTs website for all of these presentations they will be recorded I will send out afterwards readings probably somewhere between 3 and 5 articles related to the topic so the thing of the sessions is the overview and the readings have more depth to you if you're interested the after each of these sessions we will have an evaluation that we'd like you to fill out an evaluation brief feedback on the speakers from the topic to questions and that's about it there'll be a longer evaluation at the end over the whole series but we would appreciate it'll be online survey and you'll hear from I believe it's just a Jessica Wakeley who will be sending it to you so answer her click on the link answer the two questions they'll take you about 30 seconds and we would appreciate it there is course credit available and I know Paige had asked about that what you will do if you're interested in getting credit for a course credit for this this is a course that I believe is called special you see the special topics and health informatics or independent studying welcome in health informatics and you'll take it register for it in the fall what I expect from you is that you attend these sessions all of them or if you absolutely can't let let me know but attend regularly and there will be a take home final that you'll do early fall so b1 credit will be one credit course but attend the sessions do the readings and do the take home final any questions so far about this we think that this go to meeting link will probably be good for most of the sessions if you are not available Cameron's in Florida now right and Chris is up in Huntsville I think yes ma'am right so if you're not on-site GoToMeeting is good if you are on-site and can take the time we'd love to have you here so appreciate all the people all the people who came okay question for the group can you all see the picture online yes we can okay so that's what that is an element no one made it how it looks and whole would you say an elephant left they can only see a part of it and don't see the full right it's the this story the six months or the six blind men exploring an elephant and each one thinks that the part that they're holding is the whole of the elephant so the guy in the back says an elephant is like a lot looks like a snake it's long and long and windy another one says the one who's grabbing the foot in the back there says it's like a tree trunk they all have a different view and the reason I use this for the seminar is because everybody's got a different view of what's informatics you say informatics and everybody thinks they know what it is and it's always all different so some people feel that that there's clear distinctions between what might be called health medical clinic clinical and bioinformatics the distinctions are not really that clear I'm going to try to make some distinctions but they often overlap and intersect so some people will say that health is if you look at some of these distinctions that's really what people start talking about so some people think that informatics is the basically like related to molecular biology and examining as the tools to examine the genome that's a part of it some feel while informatics is clearly managing those through clinical informatics that the hospital is clearly managing those systems developing new apps for the system right so if you say informatics that's what it probably means to you your basic science researcher you're probably thinking more along the lines of the genetics research the molecular biology research and that's why in some sense understanding the vocabulary is important and there are some distinctions in the names but you know even the I don't know even people who should know kind of say the wrong thing so what I think what's important for this session is that you get a range of the type of areas that are being addressed and generally what would fall under some of these different headings so if you think of the word informatics it actually came it was originated in your in Europe and I say Europe because I've heard it said it's French and some people say it's Russian infirmity and in the US and Europe it's really been focused on computer science applied to medicine or to healthcare in the u.s. there's clearly computers involved but it's much more focused on ways of managing the vast information variety of types of information but it's almost more than using the tools and processing to manage the data and increasingly it's including analysis of the data I think initially the task with risk management now that we're actually getting somewhere in implementing electronic health records and other things we're focusing much more on the analysis of data the word attic actually means pertaining to so if you think have been ferment informatics if you think of the inform part and the attic part it really means pertaining to information and I think one of the key things to get out of this is is that the information is really central computers are important but there are means to the management the infra to give another definition that's really similar to what I've just said are you our informatics Institute which is by the way this seminar is co-sponsored by the informatics Institute and the Center for clinical and translational science the informatics is to define biomedical informatics as the art and science of organizing knowledge of human health and disease and making it useful for problem solving so it's the knowledge and information and the making it useful so that's that's the focus of really probably all of the seminar series if you think about it if getting the information organizing it and making it useful some people get information informatics couldn't confuse with the IT department that's what I was joking that we couldn't get on GoToMeeting so of course I'm an informatics I'm supposed to fix it think of informatics more on them information and than on the assistive technology and so your IT department is the ones who usually manage the network the high-performance computing center not necessarily what's done with that but manage the center cloud computing hardware software the help desk that's kind of your IT department the informatics people for instance the clinical for max people in the hospital are much more concerned about looking at the clinical systems and the information contained and extracting it using it am i right so that's kind of the distinction that you need to think of keep in mind the importance of the information so the informatics is focused on information and knowledge management and the meaning and use of the information and it actually involves a number of different disciplines if you think about information science the organization of the information cognitive science or how people process that information and make decisions organizational theory is involved when we were involved fairly extensively probably over the last ten years with the implementation of electronic new-new implementations of electronic health records understanding the organizational Theory involved in change management and other things was very very important to accomplishing those goals certainly computer science and systems engineering are also important both for development and pretty much for development and analyzing data and at development and access and analysis of data and finally as we get more into using the data for managing the biological information knowing something about the medical and biological sciences are also involved so what I'm going to do now is take you through some of the different areas of informatics and talk about some of the key areas that are key issues that they address keep key kinds of research questions or practical questions so if we start with the bioinformatics and this is in this is not an order of I don't remember I have this alphabetically or what but it's separate domains not in any particular order of importance or no importance they're all important so bioinformatics has generally been the tools for analysis and of genomics and other omics information as I you said your basic scientist are you involved with with omics data not not not much but you certainly know that it's a vet certainly if you think about management of that information huge omics data has is just huge amounts of data and we're learning more and more about both the content of it and managing it so the informatics tools the bioinformatics is really focused on some of the genetic genomic proteomic all the different omics that are dependent on informatics there are analytical tools to discover relationships often relationships between even say genomic sequence and reference databases tools for analyzing the data systems for organizing the information and databases like these reference databases of genomic information to help you interpret the data so some of the areas that are involved in informatics and as we get more into translational bioinformatics as the field matures we're going from basics purely basic science and and narrowly focus to translating that into practice so if you think of personalized health care or precision medicine is really the integration of clinical and bioinformatics so with the with the use of the bioinformatics data we'll have more information to make diagnoses we use genomic information for clinical decision support might be in pharmacogenomics so patients that are and stat me by the way if you have questions but you might have you might have patients who respond to differently to different drugs you can use that genomic information to provide support for the clinicians who are treating that patient they might give one drug to patient with certain biomarkers and different drugs to patients with another set of biomarkers there coming use more in practice using biomarkers for targeted drug development in the same way if we know certain characters as we know characteristics genomic and other characteristics of patients we can develop more targeted drugs specifically for that another area of translational bioinformatics is really associating the genotypes of genetic data with the phenotypes of clinical data and looking at disease discovery as well as some of these other areas another area of informatics and that one is probably becoming more important as patients are getting more knowledgeable in terms of computers is what's been called consumer health informatics it's patient-centered applications much of the the clinical care now is concerned about empowering patients engaging patients and there may be many informatics tools that are involved in doing that certainly personal health records I'm distinguishing that a little bit from electronic health records I remember somebody once said when I was talking about personal health records and they said well isn't my record in the hospital my personal health record it is but personal health records are generally providing patients access to their health records hospitals now most hospitals now will have a patient portal how many of you have you have seen the patient used or seeing the patient portal at UAB not pardon you I've used this a patient too and actually I find it very I find it really good because it's very hard to get my primary care physician on the phone it's a lot easier to get on the portal and it's very interesting I mean the change in patients attitude because patients problem patients are going to be more computer savvy and they're going to prefer rather than playing phone tag to contact them on the portal so some personal health records are actually there ones run by commercial systems we might take data from your actual clinical setting and combine it with your own observations and your own data that you want to put into and store it commercially I think Microsoft helpful is still around I'm not absolutely sure Google Health had something and they some years ago and they did not they abolished it the interesting thing is I think they might have been too soon because I think patients may become more interested or else the hospital portals will will take that place but the electronic patient education programs will also count as consumer health informatics several researchers have used patient education over the web to work with patients or text messaging as part of education use the number of electronic tools to work with patients and have done research in that area interventions as I said over the Internet to improve health outcomes UAB had a smoking cessation study they work with dental practices and had the dental hygienists I think either the dentists and or their hygienists recruit patients to participate in an intervention for smoking cessation but it was a lot of more web-based interventions and work with patients but in any case consumer health informatics is more about these patients facing applications we think about clinical research informatics it's the management of information in clinical research and there's a number of types of information and number of ways that it's managed so some of some of the focus of people who have been doing work in the clinical research informatics arena are designing ways to electronically capture clinical information for clinical trials UAB is rolling out we'll be rolling out I think an enterprise-wide encore system it's been used in the cancer centers I believe in the enterprise while as a management system for managing the clinical trials but capturing that information is from both electronic health record or the system specifically involved with clinical trials have been some of the focus with people who specialize in clinical research informatics another focus has been information exchange across institutions primarily for research those of you who may be in the clinical area know that clinical information exchange health information exchange clinically is an important area but in the research area is focused more on clients often there's a need to find enough patients for instance for rare diseases so UAB may have some patients but not that many to do a really good clinical trial much of the clinical research informatics focus has been designing ways to access patients at other institutions so systems and we'll be talking about that later on in in the series actually so systems are set up where a researcher at UAB could say I need patients with this characteristic and UAB right now is actually collaborating with it let me see it's Arkansas South Carolina and I think Emory where you could sit at your desktop I think it's almost refused I better be careful in case it isn't quite ready but it's in the process of becoming ready you could sit at your desktop and say I'm doing research on such-and-such an area want diabetics who are this age range who have been seen in the last six months and you can find out you could get a you can find out how many patients across all those four institutions are fit your characteristics for your trial within the Center for clinical and translational sciences and nationwide there is a move to have all the centers connected so all over the country you could see you could see who's got the most patients who you would want to work with count which ones would be the bed to do that so it can foster the cross-institutional collaborations so there's been a lot of a lot of efforts in that in that research and clinical research informatics face for some of that information sharing and collaboration another area is within clinical research informatics would be mining the electronic health record and we'll be talking about that again in the series one could be pharmaco surveillance you you know when you do clinical trials and they take forever first of all because you have to accrue enough subjects and that's often very hard to do that can take years and years well think of how many patients already have been given drugs if you're looking say for side effects or for the impact of drugs or for the association of taking this drug with something else look at how many people in practice have been given those drugs if we can mine the electronic health record to do study looking at say after drugs are approved what's the what has happened with them are there side effects are they associated with anything else that's a vast amount of information and that's an area that that is an application of clinical research informatics some of the comparative effectiveness and outcomes research studies also can be looked at from the electronic health record you can you've got just more patients than you would have if you could recruit them directly for research there may be challenges in doing that and we'll discuss that later on in the series but you've got a lot of data that can be mined and used for clinical research and I mentioned earlier the phenotype genotype Association which is some of the focus of translational it's both clinical research and bioinformatics research where there have been studies looking at again looking at characteristics of patients and how they mapped to known genotype information that it's been discovered in in genomics and genetics experiments they've been able to replicate many of those just with the electronic health record finding similar associations to ones that have been found by experimental means and then some that's what's been interesting that they replicate existing associations and find new ones because again this if you have the genomic information which we don't have a lot of at this point in time but will probably be I don't mean we UAB but in general people are not collecting that routinely but we'll begin probably begin to you can look at a lot more associations in terms of just disease discovery and then in general clinical research informatics would focus on storing organizing and basically accessing the data for research let me see if I went too far yeah no that's fine one things I want to say and I think I say this in one of our online sessions that's coming up if you think of electronic health records which as I said now I think almost 100% of Hospital from something like 75 percent of physician offices are using now they are optimized for patient care when you go to you know you said use the portal when you went to you know in your as a patient when you go to the doctor the doctor needs to see everything about you as quickly as possible I wanted all together in one place when you want to do research you actually don't want to have to go through patient by patient by patient first of all it's very inefficient to have to do that pull up their records get your information pull up the next record very very inefficient to do that but worse than that it will bog down the system for those doctors who want to get in very quickly and treat patients and get out and see the next patient so again in the electronic health record for the doctor they get structured data you know point-and-click data that that the doctor the nurse is stilled in as well as unstructured notes all of those are available to the doctor when you see them in a clinical data repository is really the database underlying the EHR and it's got all that in there and there are complex tables of data and you could so instead go into the HR I suppose you could go to that database but it's very complexed query so the idea has been to develop some system that takes feeds from the electronic health record organizes the data in a better way to access it it generally has its optimized for queries across patients so instead of going you know patient by patients and saying you know do they have such-and-such you can do queries from the data warehouse aggregate across patients and that's a much more efficient way to do advanced research questions although it requires structured data there are efforts to do natural language processing of some of the unstructured data to make it more structured that you could then put it in the data warehouse but generally those sort of unstructured notes are not going to be in your data warehouse so the more structured fields you have the easier it will be to do that research but the point is a data the clinical data a clinical data warehouse is designed to optimize access of structured data across patients where the electronic health record is not it depends on the data from the electronic health record because people have said oh we got this new electronic health record now I can just go in and dive into it and do research and you really can't it's not easy to do it it's not efficient to do it and you need a data warehouse fortunately UAB actually have an enterprise clinical data warehouse and it's got actually several different easier to use modes of accessing at which again I this is a plug for subsequent sessions we will be discussing so an enterprise our enterprise data warehouse has clinic detailed clinical data from our EHR is updated nightly so it's not you know quite real-time but it certainly is updated on a regular basis and they plan for other data to be added including other clinical data is some talk of adding some of the tissue sample data from a variety of other types of data and patient reported outcome data as well I when when Matt Lyon talks a couple of times from now he will have more information on what actually is accessible for researchers I'm always a specialist people from health services administration what that's finance data I think that they probably have plans to add that to some extent I don't know for sure and we can ask Matt Wyatt when when he's here about finance data if that's an area that people are interested in they certainly have data in there on medications and one can associate cost with medications they have data on who the you know site of services so there there's data in there already that can more easily be used for attaching finance numbers to I don't know that they have the direct finance data in there yet but in any case I wanted to say that because the if you're thinking of doing clinical research or health services research for that matter what you want to use data in the data warehouse not directly going to the EHR so speaking of EHRs if we think of clinical informatics and this is a nurse so we have nursing informatics as well it's really referring to the management of the clinical and from information and we've been talking about health IT and after I just said you know health IT is I said I see as the network's health IT and clinical informatics lightly have and pretty much almost synonymous because the this Ben as many of you probably know there's been funding for that's been called health IT funding but a lot of the work in health IT is clearly the infamy informatics and it's not the network it's not words not only the network it is related to applications clinical decision support a lot of the clinical informatics applications to support those information management needs of healthcare so how many of you have heard of Meaningful Use and if my students don't say yes they're fired now if you have the rest of you heard of meaningful use okay so meaningful use was let me see if I can say any more about it yeah mainly meaningful use was the term used for the if part of the high tech Act which was part in 2009 part of the stimulus act to encourage the use and adoption of electronic health records and the point of it was actually when they said meaningful uses we don't want you to just adopt the system and let it sit there you don't get points for spending a lot of money on an EHR you get it you get incentive to meaningfully use the information so although the criteria will often a burden in some cases to do some of the physicians the the intent was to have it you have the data used and have it used primarily in a focus on what has been called the Triple Aim which is which we can't get this improving healthcare the healthcare experience improving the health outcomes and reducing costs so most of the the incentives were for using it for those purposes but the meaningful use of health information really health information technology focused on organizing the information and using it in electronic health records we wanted to go from this to this providing information when and where it's needed with clinical Asian support is another area that has long been an area of clinical informatics interest and is now finding its way into actual practical use systems clinical decision support or assistance to provide assistance to clinician decision making could be in diagnosis treatment order choices or other things and that has a long long history from probably the 70s or earlier from the earliest history of of informatics is developing systems to assist physicians with physicians and clinicians more broadly with with their decisions and it's now more recently becoming able to be operationalized more in practice it's out of it's now more out of the research realm and into the practical and elm realm so providing another focus in clinical informatics is health information exchange providing information efficiently to those who need it with health information exchange using information to improve the quality and safety of care quality both quality monitoring of using that information is a way to do quality monitoring as well as the capabilities now electronic prescribing with built-in clinical decision support so now UAB and mint and most of the hospitals in part because of these incentives now they don't want to give you a paper prescription they want to enter it into enter it into the system when they enter it into the system there you have other data in the system it uses that data and says you know this patient is allergic to that drug you just provide you just prescribed and the physician is notified of that and ought to be changing that medication so this decision support provided in the course of the quality and safety end is both for monitoring and for safer prescribing and again providing information that patients can use we talked about patient portal before now the area of Informatics is public health informatics these are again applying the same information management tools to do bio surveillance and biosurveillance can involve looking at biological agents it can be for bioterrorism in fact monitoring what is going on sometimes getting information exchanged with primary care or with public health agencies as well there have been there have been efforts of the CDC to link to primary care offices so they might look at all the lab tests that are being done they might monitor those lab tests and see if certain kinds of bacteria or organisms are more prevalent in certain areas and it might go to way to alert physicians in an area that says you know we've got a lot of reports of lab tests being done and coming out positive for such-and-such so that's one of the focuses foci is public health informatics more recently again there's the area of population health management if you think of public health informatics is sort of managing a whole the United States or whole whole community the population health management is focusing on managing not so much the infectious diseases in the bioterrorism but the chronic diseases in many cases of a population so now again in in terms of health care is going to be more incentive not just we talked about meaningful use not just adopting not just providing metrics funds on which of these things you're doing but there's going to be much more incentives for keeping patients out of the hospital for keeping them healthy for managing a whole population so the population and population health management is a defined population it could be all the patients at UAB could be in a physician's practice all the patients in that practice and begin to monitor and again this is more like the Agri we talked about the clinical research informatics the aggregate data how many of my patients have uncontrolled hypertension and what am I doing about it how many of them have diabetes above a certain level and I can monitor this that's part of your high population health management and there are informatics tools for that so it's related to public health and that is looking at a whole population but population health management really refers more to risk assessments and management of a defined population for a clinical setting so that's that's basically the major domains of informatics there are sub ones like clinical informatics might also be called medical informatics but medicine doesn't mean just medical it means nursing also it for a while people didn't know what the word informatics meant at all it's like whatwhat's that now then it's all the different subtypes of it nursing informatics dental informatics veterinary informatics etc so those are growing but I would say these are probably what we just discussed are the major the major categories and they have somewhat different interests as well so I think that's it questions from online or here that you have no questions okay there there sever I'm not sure if I'll answer you exactly but you can you can tell me many personal health when we we talk about the personal health records for the patient's they sometimes they have been called tethered and untethered types tethered means tied you know like a tether like a holding like a rope that holds something tethered is tied to the particular health system like the electronic health record so the patient portal has certain types of information in it it's got your medications it's got your visit information some of them have communication we have communication with with the physician I think our patient portal has not had things like procedure and radiology results but maybe they're moving to that so different ones have different amounts different types of information that's tethered to the health system patients can actually download the information and take it with them I think it should be downloadable in the form that it can be electronically transferred if you needed to but it's tied to your health system other types of personal health records when we took that Microsoft helps both it's more like a repository of everything and some are more structured that you can enter data I don't know if does that is did that answer your question or okay so how in other words how could you get data from if you wanted clinical data is that what you're asking okay we have I said we have the enterprise data warehouse and again man twice can talk and show you and more in fact the online assignments will give you a chance to access some data the we have to observe a better backtrack we have two online sessions one of the end one kind little we did sort over the big gasp because I figure people way for July 4th so we're doing that one online and it's in online it'll be like an online homework assignment with readings and lectures to access but also that one also will give you a chance to access a database the clinical they essentially clinical data warehouse called I to be to it's not our example of I to be to it's like a demo copy but we have it here too and that's what Matt Wyatt will talk about so the clinic we have our clinical data warehouse that has everything again structured data from the electronic health records is used for patient here into the clinical data warehouse because it is that clinical data warehouse is used both for operational purposes and research purposes for operational purposes let's say you were running the clinical laboratory you might want to know what's the turnaround time for lab tests you might want to know which lab technician did what you might want to know lots of things related to your operations a researcher doesn't care about that what they probably really want to know is what is like you know what are the test results so a subset of the data in the clinical data warehouse are fed into a system called I to b2 and that stands for a folk instrument integrating obviously thang integrating information from the bed to the bedside from the bench to the bedside something like that I'm sorry I forget the the exact name anyway i2b2 is accessible for anybody at UAB any faculty member at UAB I think staff people may need to get a faculty permission I'm not positive you have to go supervisor permission so I to be to is a lot easier to act it first looks if you can do it yourself from your desktop you do have to sign up and you have to essentially register for it and you have to acknowledge the the rules but you can get you can do queries point-and-click queries of data and again I don't want to go into too much detail as it man about it now because otherwise I'd be repeating what Maskin say and he's going to say it in better detail than I would do although if you listen to any of the videos I am the voice of i2b2 I am the voice of the videos on we do have videos on how to use it if you searched arm but you wanted to get ahead of yourself and if your faculty or to get supervisor permission I don't remember the URL offhand if you search on I to be to UAB I think you would find the entry way signup and there are videos that show you how to do things very short little five-minute videos on how to log in you do a query etc so they're on there there's also training sessions for it that you can get hands on and such idea have you used it ah okay also one of our students former students alumni alumni she's an alumna of the master's program yeah so she so you can access it you can do queries you can get data with IRB approval you can get more detailed data you can get anybody can get aggregate data over the web free I mean free without going through a whole IRB if you want more than aggregate data you would need IRB approval for being able to access that but then you can also get that and you can use your queries to get a more precise query for the identified data or the non aggregate data are there other questions from group online or here well next step is I will be if I did I get oh did I get your email I know I got everybody else here this is signup sheet I need your name and email on there because we will be sending you I'll send you reading materials on this topic and we will and then you'll get a short evaluation on the presentation next week dr. Banno Zeidan is going to speak on machine learning and on machine learning and it's used in with clinical data and then I think the online one is next and I'll be giving you more information about that thank you all for coming oh you know what I bet he'd Oh

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