Involving Your Community in Developing Patient...
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©UNIVERSITY OF UTAH HEALTH, 2017 Involving Your Community in Developing Patient Education Darrin Doman, MS, CCC-SLP Staff Development Educator
Transcript of Involving Your Community in Developing Patient...
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Involving Your Community in Developing Patient Education
Darr in Doman, MS, CCC-SLP Staff Development Educator
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OBJECTIVES
At the conclusion of this presentation, participants will be able to… 1. List key elements of a successful community/patient engagement
studio. 2. Demonstrate knowledge of lessons learned from a U of U Health
community/patient engagement studio. 3. Identify and evaluate resources for connecting with community
members in their area. 4. Design activities to include their audience in creating printed
health information.
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“KNOW YOUR AUDIENCE”
• Teachers/Professors • Writers (script, screenplay, press, print) • Motivational Speakers • Entertainers • Politicians • Market Researchers • Health Care Educators
Couple Superheros, Image from Original works: Vegas Bleeds Neon Derivative work: FRacco [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)]
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The ultimate sin of any performer is contempt of the audience.
-Lester Bangs
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An audience is never wrong. An individual member of it may be an imbecile, but a thousand imbeciles together in the dark--that is critical genius.
-Billy Wilder
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Not only do you have to know who you are talking to, you need to know how they listen.
-Thomas P. Mullen, Mala Narain (Park Li Group)
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Where’s My Data, Image from https://janeteblake.wordpress.com/2013/10/08/how-to-view-the-data-in-a-query/
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COMMUNITY/PATIENT ENGAGEMENT STUDIO
• A forum for researchers to hear from community experts • Shapes research designs, questions • May reveal other topics, questions to explore • Not a focus group (no quantitative data collected) • No IRB required
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STUDIO SUPPORT
• Center for Clinical & Translational Science – Collaboration / Engagement Team
Note: this project was supported, in part, by the National Center for Advancing Translational Sciences of the National Institutes of Health under Award Number UL1TR00167.
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KEY COMPONENTS OF A SUCCESSFUL STUDIO
• The right participants • The right questions • The right facilitator • The right incentives
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STUDIO PARTICIPANTS
• 8 Member Panel (5 female, 3 male) – 3 participants with chronic diseases – 2 care giver representatives – 1 health outreach peer counselor – 1 representative for refugees and low SES community – 1 panelist representing patrons with young children
• Embedded diversity
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STUDIO QUESTIONS
1. What makes you want to READ printed health information?
2. What helps you UNDERSTAND printed health information?
3. What motivates you to ACT on printed health information?
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READ
• Short, simple materials that are well-organized and specific • Time/opportunity to read materials • A personal relationship with the provider • Visual appeal • A little bit of humor • Content that invites me to participate, to become a partner • Content that provides me with more information than what I could
get at home
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UNDERSTAND
• Timing of information delivery – Waiting area – Exam room – After visit – Follow-up at home (Phone, Skype, Telehealth)
• Who delivers the information • The relationship between the patient and the provider • Pictures are crucial
– Relevant – Eye-catching – Nothing gross or off-putting
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ACT
• Personal stories, cautionary tales • Ease of sharing information with others • Honesty, genuine care/concern from provider • Make a connection of how the information impacts my life • Balance the information with hope for the future
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PREFERRED ELEMENTS OF PRINT INFORMATION
• Summary section • Call out/feature important information • A list of additional resources, web addresses • Contact information for support groups • Photographs
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WHO SHOULD DELIVER THE INFORMATION?
• Someone with the same diagnosis, similar experience • Any knowledgeable person • A person from the patient’s care team • The provider • Someone with the time and ability to answer my questions
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HOW ARE WE DOING?
Archery, Image from http://www.warringtonarchers.com/archerylessons2.html
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WHAT’S NEXT?
Where do We Go From Here?, Image from https://i.ytimg.com/vi/DqnJ3yIPNLM/maxresdefault.jpg
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IDEAS
Community, Image from http://www.trb-communityimpactassessment.com/research-statments/
• List Brainstorming Results Here…
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WHO ARE THE PEOPLE IN YOUR COMMUNITY?
Sesame Street Characters, Image from http://www.thewrap.com/top-13-sesame-street-characters-ranked-from-cookie-monster-to-mr-snuffleupagus-photos/
• Health Literacy Utah • Other Coalitions • Health & Public Librarians • Utah Department of Health • Support Groups • Literacy Action Center • Others?
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OBJECTIVES
At the conclusion of this presentation, participants will be able to… 1. List key elements of a successful community/patient engagement
studio. 2. Demonstrate knowledge of lessons learned from a U of U Health
community/patient engagement studio. 3. Identify and evaluate resources for connecting with community
members in their area. 4. Design activities to include their audience in creating printed
health information.
© U N I V E R S I T Y O F U T A H H E A L T H , 2 0 1 7
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BIBLIOGRAPHY
1. Perm J. 2017;21. pii: 16-024. doi: 10.7812/TPP/16-024. Epub 2016 Nov 18. Understanding Preferences for Osteoporosis Information to Develop an Osteoporosis Patient Education Brochure. Edmonds SW, Solimeo SL, Nguyen VT, Wright NC, Roblin DW, Saag KG, Cram P.
2. J Pharm Pract. 2015 Dec;28(6):518-22. doi: 10.1177/0897190014544816. Epub 2014 Aug 20. Evaluating Patients' Understanding of Printed Warfarin Medication Information. Schwartz L, Mazzola N, Hoffman RS, Howland MA, Mercurio-Zappala M, Nelson LS.
3. Inform Health Soc Care. 2014 Mar;39(2):124-39. doi: 10.3109/17538157.2013.872107. Wikis to facilitate patient participation in developing information leaflets: first experiences. van de Belt TH, Faber MJ, Knijnenburg JM, van Duijnhoven NT, Nelen WL, Kremer JA.
4. J Med Internet Res. 2011 Dec 8;13(4):e114. doi: 10.2196/jmir.1961. WikiBuild: a new application to support patient and health care professional involvement in the development of patient support tools. Archambault PM.
5. Health Promot Pract. 2010 Mar;11(2):249-58. doi: 10.1177/1524839908318286. Epub 2008 May 27. Involving consumers in the development of a psychoeducational booklet about stigma for black mental health clients. Alvidrez J, Snowden LR, Kaiser DM.
6. BMC Geriatr. 2011 May 20;11:26. doi: 10.1186/1471-2318-11-26. Understanding, comprehensibility and acceptance of an evidence-based consumer information brochure on fall prevention in old age: a focus group study. Lins S, Icks A, Meyer G.
7. Neurologia. 2015 Oct;30(8):472-8. doi: 10.1016/j.nrl.2014.04.010. Epub 2014 Jun 27. Migraine education brochures and patient-perceived satisfaction. Medrano Martínez V, Callejo-Domínguez JM, Beltrán-Lasco I, Pérez-Carmona N, Abellán-Miralles I, González-Caballero G, Más-Sesé G, López-Hernández N, Pérez-Sempere A, Moltó-Jordá JM.
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BIBLIOGRAPHY (CONT.)
8. J Pediatr Adolesc Gynecol. 2012 Apr;25(2):114-21. doi: 10.1016/j.jpag.2011.10.007. Epub 2012 Jan 4. Using a patient-centered approach to develop a fertility preservation brochure for pediatric oncology patients: a pilot study. Murphy D, Sawczyn KK, Quinn GP.
9. Int J Speech Lang Pathol. 2012 Feb;14(1):11-23. doi: 10.3109/17549507.2011.631583. Epub 2011 Dec 5. Guiding principles for printed education materials: design preferences of people with aphasia. Rose TA, Worrall LE, Hickson LM, Hoffmann TC.
10. J Natl Compr Canc Netw. 2016 Jun;14(6):735-40. doi: 10.6004/jnccn.2016.0075. Readability of Online Patient Educational Resources Found on NCI-Designated Cancer Center Web Sites. Rosenberg SA, Francis D, Hullett CR, Morris ZS, Fisher MM, Brower JV, Bradley KA, Anderson BM, Bassetti MF, Kimple RJ.
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CONTACT INFORMATION
Darrin Doman, MS, CCC-SLP Staff Development Educator [email protected] Office: 801.213.3509
