Thank you to Kevin Progar the Regional Health Literacy Coali

Thank you to Kevin Progar the Regional Health Literacy Coali8on for the opportunity to talk with you today and for this great event! My talk today is designed to get you thinking about the kinds of folks you may find yourselves working with, more and more, in your organiza8ons: User Experience researchers and designers. I’m a UX researcher, ac8ve in both the commercial and academic arenas. And perhaps more importantly I prepare UX professionals for careers in fields like Health Care, among others. I’ll begin with some trends and then talk about a more specific project I’m currently involved with to introduce a couple of broader ideas about user experience research and the challenges we currently face. I’ll also take 8me to do a shameless plug, of sorts, for a new undergraduate degree program we’ve just launched at MSU called Experience Architecture. More on that in a moment. But I promise not to stray too far from the 8tle here either – I’ll be talking about a project that aims to evaluate and improve a mobile health (mHealth) service delivered to pa8ents undergoing treatment for Type II diabetes and heart disease in Federally Qualified Health Clinics in Michigan. The project is a collabora8ve effort between MSU, represented by colleagues of mine in the College of Human Medicine at MSU along with the the Michigan Primary Care Associa8on. 1 The internet and mobile technologies, in par8cularly, are an important component of health care. Individuals are tracking their own health outcomes and using the internet to learn about condi8ons – both for themselves and for other people in their care. Chronic disease pa8ents are especially likely to turn to online sources of informa8on and use health-­‐tracking technologies. Apple Healthkit for iOS8 h[p://www.apple.com/ios/whats-­‐new/health/ Pew The Social Life of Health Informa8on h[p://www.pewinternet.org/2011/05/12/
social-­‐media-­‐in-­‐context/ Pew Tracking Health h[p://www.pewinternet.org/2013/01/28/tracking-­‐for-­‐health/ 2 Slide Visual: The Health Literate Care Model. The model shows interconnec8ons between Community Partners, Health Literate Systems, and a collec8on of strategies for health literate organiza8ons that work to ensure produc8ve interac8ons between pa8ents and their families and care providers. There is an increasing awareness among health care professionals that our next great challenge for improving outcomes lies in improving the full user experience of large-­‐
scale health systems. Koh et. al., for instance, have proposed a model that our project team relies upon called the Literary Care Model. It is powerful vision grounded in the need to translate research into prac8ce. It goes beyond typical calls for transla8onal work, however, to name the problem of crea8ng “Health Literate Organiza8ons” in order to make these places where meaningful interac8ons between health providers and pa8ents & caregivers happen on a rou8ne basis. These organiza8ons will employ health literate systems – plural – and work with and for communi8es to foster shared decision-­‐making leading to be[er health outcomes. In this vision, Koh and colleagues point to new areas of much-­‐needed research that directly relate to the interests and exper8se of all of us in this room. Designing and evalua8ng where health informa8on systems contribute to (or detract from!) produc8ve interac8ons among pa8ents and clinicians is just one important job for an Experience Architect in the Health Care field. 3 The most recent issue of UX magazine, an online publica8on of the User Experience Professionals Associa8on, focuses on Health. This may be the largest growth area for UX For the full HIMSS usability task force report, see h[p://www.himss.org/files/
HIMSSorg/content/files/himss_definingandtes8ngemrusability.pdf 4 The final trend I want to highlight is one you will know well and likely have seen implemented in clinical care sehngs: pa8ent-­‐centered care. This is a movement that touches all aspects of health care these days from clinical prac8ce, to billing and records, to research. The recogni8on that we need to focus on systemic improvements is also, increasingly, leading to understanding pa8ents to be par8cipants in meaningful ways. Organiza8ons like the Pa8ent-­‐Centered Outcomes Research Ins8tute funds research with explicit, pa8ent-­‐guided aims and outcomes. What is a pa8ent centered research ques8on? PCORI suggests “What can I do to improve the outcomes that are most important to me?” What that means for researchers like me and others is that we must engage pa8ents early and throughout the research process to learn precisely what *is* important to pa8ents and how our specific aims might be tailored to more effec8vely address genuine concerns shared by pa8ents. PCORI: Research We Support h[p://www.pcori.org/content/research-­‐we-­‐support 5 Slide Visual: Cover of book Social Media in Disaster Response by Liza Po[s (author). The first conceptual idea I want to pass along comes from my colleague Liza Po[s, and you’ll no8ce it is also the name of our new Bachelor’s program I men8oned: Experience Architecture, or XA, as we like to abbreviate it. We think of XA as a focus on the strategy of user experience. Experience Architects are needed in a world where the user experience doesn’t stay neatly contained in one system or device, but happens across mul8ple systems. The XA’s job, in this context, is an important one: to work on big social problems along with other professionals. Not merely to make good products, but to focus on good outcomes for users across products, services, devices, and built environments. Nowhere is this more important, today, than in the world of health care. Pa8ents and providers already deal with problems stemming from disparate systems interac8ng and overlapping with one another. Even as our policy and regulatory environments are in a state of rapid change – we are today moving toward broader insurance coverage, for example, and more “meaningful use” in Health IT (HIT) systems, though don’t ask yet about tomorrow or next week – it is clear that new technology promises to transform the experience of being a pa8ent AND of being a doctor. But will it do so for the be[er? Not without someone working to make sure that we focus on the end goals when we engineer and evaluate HIT: healthier people. 6 Slide Visual: A diagram showing process steps 1) Listen, 2) Normalize, 3) Analyze, & 4) Represent as key steps in a technological context where ambient data streams may be combined, on the fly, to create feedback loops that contribute to goal sehng, sharing and course correc8on – all components of situa8onal awareness. Wireless connec8vity and the existence of device and service API’s allow users freedom to employ many types of devices to share many types of data (text, images, video, sound, etc). Censors embedded in devices and in the built environment may interact via a web services architecture to process data as it is created and shared, passing it along to be analyzed, transformed, shared, and viewed all over the globe. Last year, I published a piece with my colleague Jeff Grabill in which we presented this picture of the world we live in today. It’s a picture that helps to show the need for a category of work like experience architectecture. In this diagram, we see the basic components of what is some8mes “convergence culture” – where people using many kinds of devices use many types of services to create, modify, and share informa8on. This holds tremendous promise for crea8ng powerful, communica8on-­‐based interven8ons that solve big problems like the obesity epidemic or climate change. These are problems that have proven intractable up to this point because they involve many people making lots of individual decisions, more or less unaware of one another and unaware of how those decisions either help or hurt, contribute to the problem or contribute to a solu8on. Even if we are aware of the problem and mo8vated to make changes, we may lack the situa8onal awareness needed to take meaningful ac8on or to coordinate our ac8ons with others in ways that create large-­‐scale change. Today there are opportuni8es to build feedback loops that address these problems of situa8onal awareness. But to do so requires work that ranges well beyond a single system. It 7 In our project, the bo[om line goal is measuring whether mobile health services – in par8cular, a service meant to help ensure that pa8ents take medica8ons on 8me and as prescribed when undergoing treatment for diabetes and heart disease – actually help pa8ents. We are seeing lots of specific implementa8ons of mobile health services introduced to various popula8ons of users. But as the literate care model makes clear, how these services are designed, used, and modified to be[er suit their intended popula8ons can ma[er a great deal when it comes to seeing measurable results. Our study will evaluate a mobile health messaging service primarily by measuring, aser one year, whether or not pa8ents who used the service got be[er than pa8ents who did not. 8 We have every reason to think that mobile messaging may do some good. A few recent studies have shown good results in achieving higher rates of medica8on adherence, par8cularly for popula8ons of pa8ents struggling with complex medica8on regimens. But even more compelling than these promising results is the nature of the problem. We are looking, in par8cular, at a popula8on of people for whom the current standard of care works less well than it should. This effec8veness gap in treatment of cardiovascular disease in Type II diabetes pa8ents exists, dispropor8onally for minority pa8ents and for pa8ents who have low incomes and limited access to quality health care. These are pa8ents whose best sources of quality care are Federally Qualified Health Clinics (FQHCs), some8mes called “safety-­‐net clinics.” For these folks, “standard care” doesn’t work nearly as well as it does for white, middle class pa8ents. The reasons for this are not well known. But some compelling evidence produced by our Primary Inves8gator, Dr. Ade Olomu, suggests that the delivery of care may play a big role in addressing this disparity. In a prior study, Dr. Olomu has shown that a group ac8va8on protocol – a mee8ng – and the use of a shared decision aid – a checklist – during follow-­‐up office visits with the doctor can drama8cally improve pa8ents’ health. Pa8ents’ showed higher rates of engagement, and in follow-­‐up interviews noted that they felt more comfortable interac8ng with their doctor, asking ques8ons, etc. This was a small study, but the results align well with the desired outcomes of the Health Literate Care Model. The next step, for our team, is to evaluate ways to scale the ac8va8on protocol, including exploring ways to do make use of eHealth services. 9 In the study we have now proposed and which is currently under review, we will conduct a randomized, clustered community clinical trial in 8 FQHCs in Michigan, seeking to enroll 600 pa8ents for a period of one year each. The trial has four arms and is designed to compare the effec8veness of the group ac8va8on protocol with and without the use of an eHealth messaging service versus standard care. We chose to have four arms so that we could evaluate whether or not the mobile messaging service adds to the benefits already documented in the earlier GAP study. Data from a pilot study with pa8ents suggests that as prac8ces bring new services like text messaging on line, pa8ents want to know if they are worthwhile. If these services are offered in place of face-­‐to-­‐face mee8ngs, they want to know if they work as well or are simply there to decrease costs. Our hypothesis is that the mobile service can act as reinforcement, but will not be a very effec8ve replacement for the GAP protocol. So we expect the GAP + Cell phone and the GAP only arms to do be[er than the phone only group. We expect all of these treatment groups to outperform the control arm, however, in which pa8ents will receive standard care from their doctors. Our team consists of Dr. Olomu, the PI, Margaret Holmes-­‐Rovner and Karen Kelly-­‐Blake, both of the Center for Ethics and Humani8es in the Life Sciences at MSU and both experts on medical decision making. And of course me. The person there to evaluate user experience and content effec8veness. I can’t tell you how exci8ng that is for me, to be included and, even be[er, to be needed. J 10 Slide Visual: Process diagram showing how pa8ents will be enrolled into our trial. I’ve already described the structure of the study a bit, but I want to show this diagram as well that lays out how pa8ents will become enrolled in the trial. It is something of a simplified workflow diagram – so I am sure you will recognize it. What I want you to no8ce here the is way the pa8ent experience flows across mul8ple systems, via mul8ple roles, etc. You can see just how quickly this can become complex. And this, keep in mind, is a highly regulated trial. Imagine how it looks for a typical pa8ent where there may not be a map like this. It creates some interes8ng evalua8on challenges even before we get to the eHealth service, itself, which is actually a commercial offering called Care4Life from a vendor called Voxiva. Let’s look quickly at that service and what it does for pa8ents. 11 Let’s look at an example now of one such SMS-­‐based system called Care4Life, offered by a vendor called Voxiva. Care4Life is a customizable service, so what I am highligh8ng here is far from everything the service offers. Both care providers and the pa8ent can make choices about different features and types of informa8on that the service may deliver. Here, I am showing an example of the way Care4Life implements the sort of feedback loop I was talking about earlier. We see, in this example, that Care4Life may be able to maintain the kinds of valuable interac8ons between care providers and pa8ents that we think are instrumental to the success seen in the earlier study of the Office GAP protocol. Pa8ents interact with Care4Life in several ways. They can receive informa8on, scheduled reminders, prompts and ques8ons to which they respond (and which the doctor may also see and respond to), and finally indicators of progress such as no8ces that they are on track or have met a goal. These examples show informa8on and interac8ons focused on improving the way pa8ents take medica8on with the goal that more pa8ents take medica8ons on 8me and as prescribed. As you cans see in these examples, the messages are simple SMS – text messages only – and work on all kinds of phones, not just smart phones. 12 Slide Visual: A chart showing three levels of service that impact the pa8ent experience for the mHealth interven8on. At the top is the Federally Qualified Health Clinic, where pa8ents are likely to a[ribute all aspects – good and bad – of their experience. The middle level is the coordina8ve services level, in this case consis8ng of Electronic Medical Records (EMR services) provided by the Michigan Primary Care Associa8on. And at the bo[om we see the SMS Service Provider, Voxiva, who markets the Care4Life messaging service to providers like MPCA. An arrow drops across all three levels to indicate that all must func8on smoothly to ensure a good pa8ent and care provider experience. A successful user experience depends on some complex interconnec8ons among disparate systems – human and technical – all of which converge for pa8ents in the clinical care sehng. It is likely not obvious to pa8ents that there are different systems in play or different agencies responsible for maintaining them. When things work smoothly, this seamlessness seems desirable. But when there are problems, it can be difficult for both clinical users and pa8ents to work out how best to solve them. An XA, in this situa8on, is not unlike a care coordinator – aware of and monitoring interdependencies that bear on the quality of care. 13 Slide Visual: Chart repeated from previous slide showing levels of service that impact the user experience for users of the mHealth interven8on. Callouts highlight levels where ques8ons arise about who can access the service (clinic level) and what modifica8ons must be made to ensure access (at the coordina8ve service level). What kinds of situa8ons can arise that an XA might be able to foresee and address? In a pilot study to test the Voxiva messaging service, MPCA staff members learned that both instruc8onal informa8on for the service (e.g. user documenta8on) and messages sent via the service would need to be translated into Spanish for some pa8ents in Michigan. It was MPCA that took on this localiza8on task (our team was not yet involved in the project). This is one example of the kinds of adjustments that need to be made in accordance with the goals of the Literate Care Model. 14 Slide Visual: Infographic. “Although most consumers don’t currently use mobile-­‐enabled communica8ons to facilitate informa8on sharing with their health care providers, the majority say they would be comfortable...using a video, computer program, or mobile device app to learn more about or choose between different treatment op8ons for a par8cular condi8on (62%), addressing a health concern through an email or text with their health care provider (62%), consul8ng with their health care provider through a video connec8on (52%)” During year one, we’ll work closely with MPCA and Voxiva – the agency and vendor that develop and manage the HIT systems involved – to conduct itera8ve evalua8ons of the Care4Life service with about forty pa8ents and associated clinical staff. Improving the usability and effec8veness of the mHealth service is a primary goal – also called a “specific aim” -­‐ of this pa8ent-­‐centered research project. Without doing this, we cannot adequately evaluate the compara8ve effec8veness of GAP & mobile messaging reinforcement vs. standard care. That this is part of a clinical trial may come as a surprise, but not if you follow the logic of the Health Literate Care Model. And not if the problem you set out to solve is a health disparity among pa8ents in FQHCs! For this problem and in this model, improving interac8ons among doctors and pa8ents is literally job one. That’s the sort of job, I am proud to say, that an XA professional can not only help with but it is also one she can feel great about doing. We’ll also be contribu8ng to research to verify whether the kind of upside or “demand” for mHealth solu8onsshown here in a report by Deloi[e, drawing on Pew data, is borne out in a popula8on of users that uses mobile devices almost exclusively to access the internet and that needs to see big improvements in their quality of care. 15 If our grant is funded, we’ll get started on this trial in the Spring. I hope this example begins to show some possibili8es for researchers, developers, UX professionals and health professionals to work together to improve pa8ent outcomes. I think we are at the beginning of a new era in health research that will improve the pa8ent experience in ways that are directly measurable as health benefits. Thank You! References & Further Reading Fox, S. (2012). Mobile Health 2012. Washington, D.C: Pew Research Center. Hart-­‐Davidson, W., & Grabill, J. (2012). The value of compu8ng, ambient data, ubiquitous connec8vity for changing the work of communica8on designers. Communica;on Design Quarterly Review, 1(1), 16-­‐22. Koh, H., et. al. (2013) “A Proposed ‘Health Literate Care Model’ Would Cons8tute A Systems Approach to Improving Pa8ents’ Engagement in Care.” Health Affairs. No. 2 (357-­‐367). Olomu A, Gourineni V, Pandya N, Pierce SJ, Kaur R, Eagle K, Holmes-­‐Rovner M. : Office-­‐Guidelines Applied in Prac8ce (Office-­‐
GAP) Program in a Federally Qualified Health Center Increased Pa8ent Knowledge and Medica8on Use. Circula;on 2011, 124:A12338. Olomu Ade VGSPMH: Implemen8ng Change In Prac8ce In Federally Qualified Community Health Center: The Office-­‐Guidelines Applied to Prac8ce (Office-­‐GAP) Model. J Gen Intern Med 2013, 28(1 Supplement, June 2013):S 103. Olomu Ade VG, Steven Pierce; Margaret HolmesRovner. : Shared Decision Making Educa8on To Implement Prac8ce Change: Impact On Pa8ents' Sa8sfac8on With Physician Communicaion And Confidence In Decision. J Gen Intern Med 2013, 28(1 Supplement):S 180. Po[s, L. (2013). Social Media & Disaster Response: How Experience Architects Can Build for Par;cipa;on. New York: Routledge. Smedley BD, S8th AT, Nelson AR. (2002). Racial/Ethnic Differences in Cardiac Care: The Weight of the Evidence. Menlo Park, CA: The Henry J. Kaiser Family Founda8on. 16