Patient Engagement: How Do We get Our Patients to Work With Us in Their Care

a health care professional is caring for a patient who is about to begin iron dextran
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thanks Tom thanks Fernando thanks for being here I have two jobs to do in the next 20 minutes one is to try to help you understand why I think this idea of patient engagement patient experience is important and what it is and that its a real thing and to show you some ways that I think we could make it better so these ideas of patient activation and patient engagement are not something that we invented for this meeting this is a very well developed feel that others have been thinking about for a really long time theyre slightly different so patient activation is trying to make sure your patient understands their role in the care process how much does your patient know about their disease about what they should be doing and about how they should be working with you patient engagements a little differently patient engagement are the interventions that are designed to increase activation so we want patients activated but then patient engagement is something that we do to bring patients into their care to work with us and overall improve their quality of care this isnt the same as adherence you might say well a more engaged patient will be more adherent to their therapy theyll do better thats part of it and thats a side effect of increasing patient activation and patient engagement but its not the emphasis of what were talking about here there are ways to measure patient activation Ill show you in a minute that if you can measure patient activation you could actually show that those who are better activated will do better in their in their long-term care in other disease states and probably in inflammatory bowel disease there are different levels that you can show in patient engagement level one to just show you some examples says taking an active role in my own health care is the most important thing that affects my health so that sounds like theyre pretty activated but actually all the patient is saying is they know its important but theyre not actually necessarily doing anything to take that role an example of something at level two is I know what each of my prescribed medications do I would bet you and that you probably agree that your patients wouldnt be able to answer that question in many circumstances for what their medications do and exactly what theyre taking them for but if they can get to that level thats better than just simply saying I know that its important that I should be engaged an example of something at level three is I know how to prevent problems with my health what they can avoid what they can do what they cant do to make sure that theyre taking some control over their own health care and then getting to level four is something like I am confident I can figure out solutions when new problems arise with my health care can they problem solve do they know who to call do they know what to do do they know when to go to the emergency room versus calling the nurse vs calling you and making sure they seek the right care so you can see that its easy to say that you want to be involved but actually being involved is taking a much much deeper ownership in their health care so why do we care about this other than a measurement and just saying that its important well this has been looked at pretty well with with better health outcomes and other disease states so more activated patients adhere to treatment more they perform disease monitoring more youll hear a lot about disease monitoring over the next couple of days and we have to get our patients engaged and believe us as opposed to just giving them a lab slip and telling them to check their week 14 trough level theyre more likely to have normal BMI is hemoglobin a1c blood pressure and cholesterol and other disease states lower rates of substance abuse and then less activated patients are two times more likely to delay medical care again Im sure youll hear a lot about this over the next couple of days but the longer we wait the longer we delay for the multiple reasons that we end patients end up delaying their care though probably a slower will be to get their disease under control and increase complications of their Crohns disease and ulcerative colitis why else is this important well it leads to better health care experiences so more activated patients report more positive care experiences so just by simply engaging your patients more theyre going to report back that theyve had a better experience with their care and they have fewer problems with care coordination think of all the things we try to do and get our patients its hard taking care of these patients but if we can get them as our partners were going to end up doing a lot better this is interesting within the same provider so this is a study downing done looking from provider to provider but different patients within that provider that patients were more activated report better health care experiences compared to those who are less activated so what does that tell us its not all about the provider and its not all about the experience that the providers giving but its bringing the patient into it that will increase their positive experience and if youre involved with this at your hospital which is their caps score the consumer assessment and health care provider and system survey that many of our hospitals are very very very interested in now because of reimbursement the scores are not just about providers its about what the patients say back which is largely dependent on what their experiences of healthcare well health care costs of course have to be part of this equation so more activated patients have been shown to have lower rates of hospitalization and fewer ED visits you can look at the patient activation measure score thats the score I showed you before with the different levels and its been pretty consistent that less activated patients have higher health care

costs so there are a couple of different reasons why we want to bring them into the equation here and if thats not enough if youve heard us talk about PQRS measures over the past couple years well guess what thats changing again soon and in 2015 CMS is now going to be looking at something different which is the value-based payment modifier amount this directly impacts our reimbursement by 2017 were all going to have to be dealing with this and if you look at the components of this its not just about reporting quality metrics its about the patient experience its about care coordination and its about cost so we need to think about this but the good news is we can get our patients involved to help us as opposed to doing it all ourselves so can we increase activation levels or is this something that a patient just comes with and you say well too bad youre not activated what can we do to make it better well there are multiple interventions that have been shown to increase patient activation consistently to show improvement in these activations scores and as Ive shown you higher activation scores lower costs better outcomes theyve shown improvement some quality of life health outcomes as mentioned objective clinical outcomes adherence to treatment reduce symptoms reduce hospital readmission rates and reduce use of the emergency department so things that we can do have already been shown in other diseases to make these better so how do we do this in IBD well there are a couple of different ways we can approach this first is engaging our patients and shared medical decisions and getting them involved and Ill show you some work that we and others have done thinking about what their goals of therapy are not our goals of therapy not histologic healing but what are our patients goals of therapy developing tools so that they can be part of the decisions and decision aids and then something that Gil melmans already talked a little bit about today this idea of partnership with patients so shared decision-making if youre not too familiar with the term is the process of interacting with patients who wish to be involved with their healthcare providers and making medical decisions this isnt all patients patients come in all different varieties and you know this when youre sitting in the office you have patients who say you know what doc whatever you say Ill do these are my typical VA patient examples I use where I love those guys you can ask them to do something thats pretty much what they do and they dont necessarily want to be involved I know a gross generalization but oftentimes at least in my experience fairly true there are many patients that come in and this is the opposite end of the spectrum who they bring in the latest publications from the New England Journal of Medicine theyre reading about the microbiome and the genome and they come in essentially tell you what their care should be which can be helpful at some point sometimes maybe they can be overly activated or overly engaged but I find that those patients that in the past we would think were being more difficult or bringing information to us often times many times have great value that theyre bringing to their care because you know that theyre engaged and you know that youre going to be able to work with them and really have them be part of their care but the type of patients that most people are is this collaborative role they bring their preferences they bring their knowledge they bring their skills but want your advice and our guidance and how to make decisions if you ask patients in other disease states how often they want to be part of medical decision-making most of them do about eighty percent of patients want to be part of their care but about twenty percent of patients and other disease states these were patients with RA and with diabetes said that they would actually totally prefer the doctor to make decisions so we have to sort that out theres a one of my colleagues at Dartmouth named gone elwin who is one of the worlds experts and shared decision-making and he says when youre meeting with patients one of the things you need to do is make a preference diagnosis as how they want to be involved in their care and that really can help you in your conversation with them to see how they want to be engaged or is this something that they want to simply follow your lead and that is going to happen in a certain amount of patients in IBD it slower though so this isnt a survey a work that we publish or Im sorry presented over this past year of ddw that almost ninety percent of patients had this overwhelming desire to be part of shared medical decisions so its going to be fairly unusual for IBD patients to say they dont want any part of it they in general really want to be part of the decision-making now thinking about goals of therapy and this is something that Ive only really started to think about over the past year or two maybe I have I should have been thinking about this longer and maybe you have as well but we sit at these meetings and we argue over the definition of better we talked about endoscopic healing we talked about histologic healing we talk about all different scoring systems for how to know that patients are better and when we ask our patients and Im sure youve done this of what they mean by better they all have different answers for what they know and mean about when theyre better Ive asked my patients frequently to send me pictures of things they do when theyre better and these are the type of things they talk about they talk about getting back to skiing about mountain climbing thats a snow bike by the way on the bottom right hand corner which are pretty popular in New Hampshire these days and theres my buddy Vern fishing but patients

have individual things that they know when theyre better versus not better and a patient in a focus group that we had a couple weeks ago really expressed this well we were trying to define if theres some metric for remission and he said we all have different ones for me I can go to the movies when I can go to the movies thats when I feel better if you asked me doc when I came in if Ive been to the movies recently and I said yes Im better if I cant go that means I cant sit through it I cant even stand in line to get tickets and that for me is my personal sign that Im getting better and I think we have to start thinking about individual goals of therapy a little bit more as opposed to just indices that we might use to enumerate if our patients are better or not the other thing weve been working on is this idea of hierarchy of needs for the IBD patient if this looks familiar at all this is stolen not this I redevelop this for IBD but this idea is stolen from the Maslow hierarchy of need remember your psychology 101 class in college and you and and what Maslow taught us is you cant think about the fine tuning in life until you get the basics right you need a place to live you need your health you need to be able to breathe you need food and only after you get that can you advance to the higher parts of this pyramid so if you think about that / inflammatory bowel disease we as doctors are focused on the top of this were doing scopes were doing imaging were watching their CRP well Im embarrassed to say that I definitely check more CRPS then I make sure that my patients can leave the house comfortably without having to wear diapers that theyre not in continent during the day that theyre able to sleep through the night those are the things we need to be asking our patients at every visit not necessarily being so fixated on every three or four months CRPS with God knows what we do with all that information wont get it anyway we started to ask patients this a little bit of what their most important goals are in their care and they just want to feel better if you look up the top they want complete resolution of their symptoms they dont want to be a little better they want to feel completely better they want to avoid hasta meas they certainly want to stay alive and they want to not miss work or school and they want a biddie achieve life goals you know Tom and Gil are our number one quality metric that weve always focused on is steroid-free remission but you know patients said hey steroids are important but they werent anywhere near the top of what was most important to them we know that we think this is important but when we ask patients they were more focused on just feeling better and just being able to get to work as opposed to the very hard outcomes that we know are important but necessarily arent the most important things to them so what our decision needs decision aids arent a pamphlet that you give to a patient after youve prescribed a medication and said read about this and let me know if you have questions their interventions that are developed to help patients make a shared medical decision its typically a presentation of evidence based information in a present in a patient friendly format remember the way that we can get data remember the patients I told you bringing in publications from the New England Journal of Medicine those arent decision aids thats data and thats information its our job to try to distill that into something that can be very easy to understand for our patients again this field isnt new if you think about how many Cochrane analyses have been done inflammatory bowel disease I dont think theres a single one that has 86 randomized control trials to make the point but in shared decision-making world there are 86 randomized control trials that show that decision aids tools to help engage and share medical decisions are beneficial to patients they can come in all different forms you may have seen me show this before this is a risk palette this is a picture of what are meant to represent 10,000 patients with inflammatory bowel disease I use this almost every day in the clinic when Im talking to patients about their lymphoma risk and instead of telling them that lymphomas rare which has various meanings to patients or telling them that they shouldnt worry about it or that its very unusual I show them visually that in the background population in the United States about two out of ten thousand patients over the course of a year will develop lymphoma just by bad luck without any medication exposure however with medication whether its mono therapy or combo therapy I think a reasonable rate is around six or nine out of ten thousand over the course of a year and then sitting down with patients and showing this to them Ive had very few patients leave theyre frightened about lymphoma they have a much better understanding of what the real risks are youre not saying theres no risk but youre putting it in absolute numbers and showing what I think is a fair representation of what we can talk to our patients another example is something called an option grid this is online and you can find this this is a one page description of side by side comparisons of immunomodulators versus anti-tnf s vs combination therapy it gives evidence based data about benefit and about the risks of these therapies how theyre administered and its something that you can print out and hand to your patients thats very easy Paramveer do lie whos here now who is it you see if UC San Diego working with Bill Sanborn and I worked on an option grid for pediatric inflammatory bowel disease if there

pediatricians in the audience thats available as well here are videos that we developed working with a great company called Emmy solutions in Chicago we work these out using evidence-based data sitting in focus groups with patients trying to really understand what they wanted to hear and what they wanted to learn about their disease and about treatment options and im going to show you just two short clips the crohns disease therapy one we developed a couple years ago and weve been using now with great success in patients and also in a clinical trial setting the UC version just finished over the past couple of weeks and Im happy to say that theyre both available to all professional members of the CCFA so Tom made a good plug to for a lot of reasons you should become members of the CC AFF or not if you are a professional member the phone numbers there or just call the main CCF a number and ask to talk to the professional services people theyll send you a stack of codes which are sign-on codes you hand the codes to your patient like a prescription and the patient could go on sign and watch it as many times as they want with their family review it ask questions and theres a way for them to interact and print out questions that they have for their providers so if you can just run that first clip for a few seconds thatd be great now before we get into the details I wanted to let you know while medications can help prevent problem is studies show getting deprivation event talking about are more effective when people start taking them closer to the time they learn they have Crohns and before problems develop thats why your doctor may want you to think about using these medications now because once problems develop their very hard to fix or treat with men you stop that one please so that goes on to go into all the different options and we do get into this idea of early versus late treatment and I would argue that that conversation could take you two hours in the office this is about a 30 minute video that your patients can watch after the visit and then follow up with you or maybe better yet watch before the visit before they come in and talk to you about these medications heres one that we just finished worked with a number of great people Mina better pen was helpful dr. Stefan hollow bar whos a colorectal surgeon at Dartmouth with us with helpful worked with a great group with Asha corn booth as well in the surgical options for you see section here if you can run this just for a few seconds thatd be great now I know you may be thinking I could never get used to an ostomy right but once people have it they realize they can travel play sports swim and scuba dive but there are even professional athletes who have them and while you may not plan to go pro its usually a big improvement quality of life so even if its something you dont consider for many years its good to know most people are surprised by how much they like it okay lets take a quick look at getting a J pouch so this goes a rescission fee traveling through the different surgical procedures time for recovery whether it can be you can stop that there this goes into pretty good detail about the different surgical options for you see and actually plays out I think very fairly that surgery is an option at any point in there all sort of colitis treatment theres a second module thats being developed now that goes into much more detail about all sort of quiet surgeries as well and I hope from an a year from now will be showing you that video and itll be available to your patients as well so this is my last slide talking about this idea of partnership with patients and Gil Melman mentioned this earlier and if youre interested to hear more please come and talk to Gil and I about this quality improvement collaborative learning health system that were putting together this is something weve been working on in the past number of years the focus here has really started to change to take advantage of bringing patients into the equation partnering with them getting them engaged and getting them part of their care in a much deeper way than they had been before this is not a database project where were going to go through charts review whats happened to them and report it out to PQRS this is a project were going to be working very directly with patients getting outcomes reported directly from them and to help work with them in their care to do all these things that we talked about a little earlier so to summarize I hope Ive convinced you that patient activation is a good thing we have to think about this this is a real thing and we have to try to identify patients that are engaged to take advantage of it or this patients who arent and how we can improve it patient activation leads to more than just engage patients but potentially better health outcomes and probably lower costs we need to identify patients personal treatment goals not just our goals but understand what they need really out of their care and help them focus on that and theyll I guarantee be much more engaged if we do that and then finally decision aids can help engage patients make better decisions and ultimately improve their quality of life so thank you again if youre interested in getting these tools if youre a quick work with your phone you could scan my QR code here all of the tools i showed you are accessed right there otherwise let me know id be happy to point it to our research site and you could print out the risk pallet the option grids and pointed toward to the other stuff as well so thanks again guys and look forward to coming back to talk

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