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Guidebook: Adult Health Literacy

2012


ISCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK

Guidebook Section 1: Introduction Background – Health Literacy Over 90 million adults in the United States have basic or inadequate health literacy. People with low health literacy skills have difficulty communicating with healthcare providers, reading medication instructions, following treatment regimens, and understanding hospital paperwork, such as consent forms. In addition to the personal tolls that low health literacy takes on individuals and impacted communities, the issue of inadequate health literacy creates societal problems as well. Low health literacy is a huge economic burden on our health care system. Estimates from researchers at the George Washington School of Public Health and Health Services put the cost of low health literacy between $106-238 billion annually, which is up to 17% of all health care expenses in the U.S. Minority groups are disproportionally impacted by low health literacy; however, low health literacy is widespread nationally and U.S.-born, White individuals make up the largest number of low health-literacy individuals because they are the largest section of the population. Meet Our Learning Community! Our Learning Community included graduate students in Health Services Administration, Physician Assistant, Public Health, Master of Science programs. We focused on tackling the issue of adult health literacy and worked with diverse community partners, each with unique health literacy needs. Our community partners included: • Emery House, a men’s transitional housing program • Mary’s Center, a health and social service organization serving predominately Latino communities • Whitman Walker Health, an HIV/AIDS care and social service agency • Bread for the City, a health and social service organization serving homeless, vulnerable and working poor We facilitated health literacy workshops on a variety of topics: • Clinical health literacy: how to understand prescriptions and over-the-counter medication, when to visit the ER, what a medical home means • Health information: how to search for and evaluate health information, what are credible sources of health information, using the internet for health topics, and how to apply health information to the health problem • Everyday health literacy: interpreting health risks, prevention behaviors, following health recommendations, and identifying and understanding social factors that impact health Each workshop provided participants with both knowledge and skills to allow them to increase their health literacy know-how and share it with their families and communities. We approached every workshop with a variety of hands-on activities to get our participants engaged and ready to contribute. The process was interactive and we tailored our sessions to the abilities, needs and strengths of our group. As a group we divided up our duties based on expertise, past experience, and schedule availability. For each module the team kept in contact with the site leaders in order to ensure that the modules were executed in a culturally relevant nature and spoke to the immediate needs of the community members. After each module the team asked community members what they would like to learn about during the next meeting. This type of dialogue was imperative in making the modules relevant and successful. The ER vs. Medical Home module was prepared, practiced and presented in a mock-presentation style at an all-team ISCOPES Teach-back meeting. There, we had the opportunity to work as a full group with three coaches, debrief and re-evaluate all aspects of the module. By working as a group with strong support, the team learned to identify and develop learning objectives and receive feedback after presenting the module to the team. We were able to take this information and apply it to each site. What our ISCOPES group members had to say about our learning community:

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ISCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK

“Our inter-professional team allowed a diverse group of people to bring different skills based on their experiences. Working in teams is a part of almost every profession and knowing how to work with and manage different personalities is important in career, and in life. In working with our team, we learned that we are not alone in our passion and dedication about helping the diverse community in the DC area in aspects of health literacy and medical care.” “Working with people from different backgrounds, specialties and modalities of study means that your team's approach to the community will be dynamic, unique and interesting!” Key Recommendations for Future Success: • You'll get out of ISCOPES whatever you put into it – Be honest about your ability to participate and, if you can, jump right in! • Go to your sites earlier in semester, even if all workshops aren't planned out. It will make it easier to get to know their interests and needs. • Get to know the community’s interests and level of knowledge before presenting • Be inclusive and acknowledge that health practices may/may not be shared by all individuals present. • Be open-minded and patient throughout the entire ISCOPES process, it may not make sense at times and it may seem intense and demanding, but the benefits will stay with for your lifetime. • Manage your time wisely. Continually evaluate and re-evaluate your agenda. • Practice, at least once, the module you will be teaching. It helps to learn the materials and gives you and the team an opportunity to fine tune exercises. • Strive to be culturally competent. Be mindful that certain groups may be particularly sensitive to use of language due to historical stigmatization or marginalization. • Be interactive, don’t lecture! • PowerPoint is unavoidable sometimes, but there are such things as a fun PP presentation and a boring PP presentation. Do not fill the entire slide with words! That would put anyone to sleep. Use pictures and examples. • Make posters large so that people from the other end of the room can read the words. Remember that folks with lower income may not have very good vision insurance, so their prescription glasses may not be up to date. • Advertise before hand! You don’t want to spend all that time preparing just so you can present to 2 people. • Don’t be frustrated with scheduling dates. Site contacts are very busy. Remember that they’re taking time out of their schedule to accommodate us. • Be kind and courteous to everyone, especially to team members, participants and site contacts. • Always remember to take several small breaks, as audiences have short attention spans. • Be mindful of your audience’s language and education level. • Create takeaway items such as handouts or pamphlets. • When demonstrating with props, try to bring multiples as you may have a large number of participants and everyone should feel included in each activity. • HAVE FUN! And get to know your community and it’s members.

Guidebook Section 2: Process Details Chart

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!SCOPES Adult HealthLiterocy Leaming Comm1lllity: 2012-2013 GillDEBOOK Mary's Center Emery House Our service project Knowledge of Overallhealth focused on specific health literacy among increasing/ topic s through the homefess men in improving ... use of theinternet the DC area Comfort level in taking prescription medicine and

asking health care providers questions about prescriptions,as w eU as learning what types of

situations are better taken care Our service proj ect of at the focused on emergency room increas ing/ versus medicaJ improving . . homes. Among Wh ch 20 or older Ages? Among people

Knowfedge of prescriptio n medicines,using the internet to search for health infor matio n

18 to 65

w ho partialf y or

fully identify as which races/

ethniticies?

Hispanic

Black

Among people who identify with which immigration status?

Recent immigrants

Mostly Amer ic an

Among people operating with

what English proficiency? Among people who identify with

L mited or no High English English proficie ncy proficiency

which gender(s)? Female Among people who financially live.. Low income Among people who fulfill the follo wing family role.. Mothers Among youthin... NA Among people liv ing with Among a communit y partner site's ... Among Other People not listed

here (Optional Comments)

Male

LowIncome

NIA NIA NIA NIA Homeless popu ation

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ISCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK

Guidebook Section 3: Arrival and Getting Around A Few Key Things to Remember: • Participants are sophisticated and engaged! They appreciate the group bringing in creative activities, such as icebreakers and physical activities. • Having a coaches (especially clinicians) attend workshops helps tremendously because they can provide guidance and answers on the spot. 1. Emery House Since there were no long standing groups for us to join at Emery House, we relied on the staff to advertise for us. They alerted the residents to the class using the loud speaker. Mr Baylor, our contact at Emery house, also made enormous efforts to round up residents that he thought would benefit from our presentation. Module One was truncated because of time and resource constraints. The facility does not have a Wi-Fi connection or a computer lab. Module Two was well received, focusing on Pharmaceutical Literacy. The Pharmaceutical Literacy module was chosen due to Dr. Schroth’s availability. A poster board was made that had a enlarged prescription label, with answer keys covered up. This was originally planned as a prop to a game. The game was cancelled because the poster board was too small to be seen by someone only a few feet away. As a modification, we went over the poster and answer keys together with the participants, and giving them suggestions as we went along. For example, when we pointed out where the number of refills are indicated on the label, we also made sure they know that if they run out of refills, sometimes they can ask the pharmacy to call the physician's office to request for more refills. We also spent about 20 mins on over the counter drug labels. We emphasized the fact that a person can as easily overdose on over-the-counter (OTC) drugs as on prescription drugs. We pointed them to the instructions and warning sections of the label. We provided an example of a OTC drug that had a label printed on the sticky side of the bottle label that required one to peel in order to uncover the instructions, side effects and warnings. Though this was new information for some participants, others suggested that some of the information was a bit basic and common knowledge. 2. Mary’s Center We held three workshops with a group of Latina Women who regularly meet once a month as a support group. The first module we did with them in December 2012 addressed pharmaceutical literacy. The second workshop held in February focused on health information literacy via the internet. (The Montgomery Branch Library offered their computer class space to Mary's Center as a way to introduce the women to the library services.) The third and final workshop in March addressed health system literacy, specifically looking at when it would be appropriate to use the Emergency Room or medical home. We were fortunate to work with an established support group. Mornings worked best for this group of women. Since they were all Spanish-speaking, it was really important for the instructors to be fluent in Spanish. Mary's Center was really pleased with the information we shared with the women. The points of contact told us that we worked very well as a team and enjoyed our enthusiasm. They told us they would be interested in having another ISCOPES team next year. One of the first adaptions the Mary's Center team did was to translate each module into Spanish and prepared handouts. As a group we divided up the translation based on Spanish proficiency and schedule availability. The translation helped the group become familiar with the vocabulary of each topic in order to prepare for the execution of each module. After the completion of the first module we modified the additional modules by adding a physical activity component. We added a self-massage stress relieving activity, a juggling activity, and a power pose activity. Due to technical complications and time constraints, after the first module we only used physical demonstrations/props, i.e. handouts, pamphlets, medication bottles, to enhance each session.

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ISCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK

Module 1 Objectives • Describe how to distinguish different types of websites • Demonstrate how to use the internet to search for medical information • Guide participants through searching a trusted medical information website Module 2 Objectives • Identify the parts of a prescription label • Describe 4 side effects • Determine what time to take medications • Identify six questions to ask your health provider Module 3 Objectives • Describe an emergency department and medical home • Describe three differences between an emergency department and a medical home • Activity: Choose medical home, Emergency Department, or Pharmacist after hearing a scenario in which one would seek medical attention. 3. Whitman Walker At Whitman Walker, we were able to collaborate with a long-standing support group that met regularly on Tuesday nights. This was an optimal set-up as we didn’t have to advertise to get a large number of participants.The Health Information Literacy module was done first for participants of Whitman Walker. We were able to schedule the computer lab at Himmelfarb library for our use and participants were given Metro tickets to compensate for their travel expenses. The Himmelfarb computer lab provided all the necessary equipments necessary for 20+ participants to have their own computer so they can explore MedlinePlus. Additionally, food was provided. We prepared a powerpoint presentation, written at a 3rd to 5th grade reading level so we could accommodate a wide range of audience. The module was condensed to a 30 min presentation so that participants had at least an hour to explore the internet. The five criteria listed in the starter project were: Accuracy, Authority, Bias, Currency, Coverage (ABCs). The module was adapted to meet the unique needs of the community and address issues of HIV prescription drugs and even attempt to address some cultural competency issues. Our coaches, especially Karyn, were very helpful in giving us useful information about the communities we would be serving and about the issues they are generally most concerned about. 4. Bread for the City The development of the Bread for the City project began late in the year. In order to bring health information to those at Bread for the City, we attended the clinic on a Thursday morning in April to provide materials about pharmaceutical literacy in their waiting room. We had been told that depending on the day and time of day, the waiting room may be empty or it may have quite a few people. We were told that Tuesdays and Thursdays are busiest; however, since we were operating in a waiting room setting, we were not sure how many people would be present at any given workshop. For this reason, we arranged a more flexible informational setting rather than a structured workshop. Though we did not follow a particular starter project workshop plan, we incorporated details from the Pharmaceutical module as well as general health literacy information. In the waiting room setting at BFC, we began by using a chair aerobics activity to get people involved and moving. Once the activity was completed, it seemed that individuals were more comfortable with approaching us with their questions or speaking with us in general. The waiting room scenario of course is not as ideal as a planned and organized module conducted for a set audience at a specific time; however, we were still able to share some valuable information with some people in need of that information.

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ISCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK

Guidebook Section 4: Departure (Outcomes/Impact) 1. Emery House At Emery house, I learned that we are all special and unique individuals not matter who are: the HIV+ patients, the seniors, the indigent, the forgotten, homeless etc. The men of Emery House deal with specific issues on a daily basis and shared their thoughts, hopes, and concerns. The outcome of Module One was an increased understanding of Internet terminology and of useful resource sites. Many of the residents had used the web to research health information, and the Module helped them differentiate between those that are credible, and those that are not. The outcome of Module Two was an increased understanding of the differences between prescription and OTC drugs, as well as how to properly use them according to directions. Many residents were unaware of the proper way to store drugs, the difference (or lack thereof) between generics and name brand, and hidden instructions on drug labels. The gentlemen at Emery were very open, and spoke freely about themselves. Some are more shy, but they were generally very receptive. It may be helpful to work on a better way to market the sessions, as no more than 10 men came at one time. There are many men at Emery House, usually between 70-100, at any given time, so there is a larger audience that can be reached. Working with Mr. Herb Baylor on incentivizing residents to attend will help greatly. 2. Mary’s Center Through our health literacy modules, the women have picked up decision-making tools to be more comfortable when interfacing with health professionals and taking care of themselves and family. The community learned more about general health literacy, but more importantly, they were able to take this information and apply it in their lives. Further, the women at Mary's Center learned a few new things about community, wellness and self-love. We did not formally assess outcomes. At the end of each workshop, we informally asked participants questions about the topics covered to confirm we had achieved each objectives for that module. We also received informal feedback from the contact at Mary's Center and our coaches after the workshops. As a group, we had opportunities to reflect on our performance during monthly team meetings and developed a few specific recommendations for future outreach. We felt that the translated modules could be offered at other sites that serve both low-income Hispanic men and women. The three modules are easy to teach and the material is easy to understand. One recommendation we had for the pharmaceutical model was to have the label on the bottle be in Spanish since not all participants could read in Spanish. A second recommendation is to include a stress reduction activity at the end of the session. The participants found this activity to be particularly fun and also instrumental to help them reduce stress. For the information literacy module, we recommend that team members sit with a participant to help them figure out how to use the computer and answer any questions they may have but are too shy to ask in front of everyone. 3. Whitman Walker Formal evaluations were conducted only for the Health Information Module. The intervention goals were to 1) Increase knowledge about how to apply the five criteria to critique a website; 2) Expose participants to useful and trustworthy websites; 3) Help participants know it well enough to be able to teach a friend. It is very unrealistic to expect a skill increase after only 1 session, however we can expect a reasonable amount of knowledge increase. We provided a evaluation survey for our participants. The results were positive. All participants stated that they learned new information and that it was either useful (38%) or very useful (62%). The participants felt they learned of numerous new websites as trustworthy places to get accurate health information from. One participant also learned how to use a computer for the first time, after having expressed anxiety about using a computer. They also provided valuable feedbacks that will help us structure the module a lot better. One participants asked for us to “get the information out� so that more people can benefit from this. The following is a visual summary of the data collected:

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!SCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK Evaluation Results for Whitman Walker Health J/? 9.l?Ji.!? Class March 12,2013 at !./W .V. ff_m;-fJil!IW·Library -Room BI03

I !Evaluation Question

l-Vhitman \Valker Health, D""'13evaluations returned (100%1)

I. Did you learn any new resources: !Yes:

13, 100% 0 yes,what new websites did you learn? Drugs.com, RJ<.I.i.>.ffi!l), M s\lin P.lY.> (6), .i!! iPf.QP!M!i:s (2), !!f :i\Qn . NCCAM (complementary and alternative medicine of NIH),National ibrarv of Medicine, NIH (3), . Content of1he workshop: INot useful: 0 [Useful: 5, 38% lverv Useful: 8 62% 13. Workshop skills and inform ation that Just how to go about thinking about constructing a useful search . [Were most useful: What to look for in a site. INo:

nr

All - I am a first time user.

Leaming about credibility of certain websites. earning to use the search. The 5 rules of identify ing quality information. The variety of websites. Being able to identify what websites are based on actual info. Every thing. llVand Hep C.

14. Leasl useful pans oflhe rworkshov: 5. Pace of this workshop: oo Slow: µust right:

rroo Fast:

.Suggestions fer improvements?

low to access med info websites. already know how to use a computer.

0

13, 100% 0 um off the lights during the powerpoint. etter structure in the lab component.

et the information out for all people at lot for me and all my brothers and

Waysto use rhe informan·on:

ore time on th e com uter. pply to my private/personal research. o look up the different m edical issues I currently have and any that I ight have in the future. t helps me - well to understand more. es.definitely. enIvisit my doctor next time (use the websites). ·lelp talk to patients about how to use the internet. · ucate myself more on srudies that are relevant to me. such as HIV and

.n WXQ. HIV meds, andtestosterone. rowse on the Internet. se some of the websites given. ractice going on the web pages. sist Church in compilation of cookbook of natural remedies. alking to my primary care doctor. 8. Website evaluation criteria .com .org riteria:

62% correct 2% correct 62% correct:funding, source, credential,consistency , agreement with edical roviders

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ISCOPES Adult Health Literacy Learning Community: 2012-2013 GUIDEBOOK

4. Bread for the City During our Thursday morning BFC visit, there were few people who interacted at first. Once we got into the chair aerobics activity, we had more individuals get excited about moving and physical activity. They became more comfortable with us, and approached us with questions when we explained who we are and what we had to provide. Because the Health Literacy learning community had so many projects this year, Bread for the City did not come into play until nearly the end of the year. Because this site is generally flexible with times and dates, I would suggest that individuals who do not have very flexible schedules try to create and attend sessions at the BFC waiting room. A lot of valuable information can still be shared, and as more people go, we can perhaps determine the best times to hold workshops in the waiting room at that site.

Guidebook Section 5: Do’s & Don’ts DO: JUMP RIGHT IN “Get involved soon! Don't wait until a workshop is planned to visit a location and see what it's all about. See multiple locations and get to see what is needed and how it's being addressed though out DC!” DO: KEEP YOUR EYES (AND HEART) OPEN “As someone from a pure science background and no public health approaches ever, I have gotten the chance to learn more than I could have imagined from the other members of the group, the coaches, and most importantly, the community. Even the seemingly little things, such as watching kids as their mothers are learning more, does matter more than you can sometimes see on the surface. You just have to keep an open mind and want to help.” DO: TAKE A STEP BACK AND LISTEN “The most important thing that I learned from my ISCOPES group and our community members was the strength of listening. When given the opportunity to speak, people have amazing stories to tell.” DO: PLAY TO YOUR STRENGTHS “Future teams should possess these critical skills when working within the Washington, DC area which is filled with multiple cultures and education levels: foreign language skills, management of time, creativity, and overall flexibility.” DON’T: BE AFRAID TO LIVE WHAT YOU’VE LEARNED “I will use [ISCOPES] to advance my goal to attain social justice within the health care system by attempting to create changes within current health policy and health law arena.” DON’T: UNDERESTIMATE THE POWER OF A TEAM “Learning to support colleagues in their service, as well as ask for help when I need it, are critical lessons that I will carry with me into clinical practice.” DON’T: FORGET ABOUT THE ISCOPES OFFICE “The ISCOPES office provided tremendous support in reaching out to [sites] to introduce the team and later in providing materials, prizes, and food for the workshops.”

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Fy13 team guidebook adult health literacy