Slide Presentation from the AHRQ 2008 Annual Conference
On September 9, 2008, Elizabeth A. Hahn, made this presentation at the 2008 Annual Conference. Select to access the PowerPoint® presentation (3.4 MB; Plugin Software Help).
Cancer Care Communication (C3):
Enhancing Patient-Centered Cancer Care for Vulnerable Populations Through the Use of a Low-Literacy, Multimedia Information Technology (IT) System
Elizabeth A. Hahn
Department of Preventive Medicine and Institute for Healthcare Studies
Feinberg School of Medicine, Northwestern University
Director of Biostatistics Center on Outcomes, Research and Education (CORE)
Evanston Northwestern Healthcare
A model of Patient-Centered Care (PCC)
In patient-centered care the following three elements interact with each other: informed, activated, participatory patient and family; accessible, well organized, responsive health care system; and patient-centered communicative clinician. The interaction between these three elements leads to improved communication and improved health outcomes.
"Clinicians, patients, relationships (clinical and social), and health services are all integral to patient-centered care. The interactions among these elements are complex (Epstein et al, 2005) and deficits in any one area can significantly decrease the quality of patient care." [from 2007 National Cancer Institute/National Institutes of Health NCI/NIH Pub. #07-6225: Patient-Centered Communication in Cancer Care.]
Background and Significance
- Vulnerable populations (low literacy, racial/ethnic minorities, low income): less informed about diagnosis and treatment; less likely to be satisfied with communication with health care providers.
- Healthy People 2010 goal: to use communication strategically to improve health.
- Use of new information technologies is recommended as a strategy (Kreps et al, 2003) for improving access to health information and for enhancing the quality of communication in health care delivery.
Cancer Care Communication (C3)
Primary Aim. To test whether a low-literacy-friendly multimedia information and assessment IT system used in daily clinical practice improves patient outcomes during treatment in 200 breast and colorectal cancer patients.
Endpoints: satisfaction with communication, knowledge of cancer and treatment, self-efficacy, adherence to treatment, health-related quality of life.
Secondary Aim 1. To evaluate relationships between patient characteristics, resources, needs, behaviors and outcomes using the Behavioral Model for Vulnerable Populations.
Secondary Aim 2. To test whether use of the multimedia IT system improves patient outcomes regarding the early post-treatment surveillance period (3 months after treatment).
C3 Randomized Clinical Trial
Control (n = 100) NCI brochures, usual clinic practice vs. Intervention (n = 100) NCI brochures, usual clinic practice plus CancerHelp®-Talking Touchscreen.
Control and Intervention patients will use the Talking Touchscreen to complete questionnaires (Baseline, Month 1, Month 6/end of treatment, Month 9/posttreatment surveillance)
The Talking Touchscreen
(Hahn, PI: AHRQ/NCI #R01-HS10333)
Hahn EA, et al. The Talking Touchscreen: a new approach to outcomes assessment in low literacy. Psycho-Oncology 13: 86-95, 2004.
Hahn EA, et al. The impact of literacy on health-related quality of life measurement and outcomes in cancer outpatients. Qual Life Res 16: 495-507, 2007.
La Pantalla Parlanchina (Hahn, PI: ACS #TURSG-02-069-01-PBP)
Hahn EA, et al. Quality of life assessment for low literacy Latinos: A new multimedia program for self-administration. J Oncol Manag 12(5): 9-12, 2003.
Talking Touchscreen logo and a photograph of two women working with the touchscreen.
An example of a touchscreen. "I have a lack of energy" is presented. The participant can choose from the following answers: not at all, a little bit, somewhat, quite a bit, and very much. There is a button to return to the previous question and another to go to the next question. An icon is next to text to listen to the text.
Table shows the following data:
- English (Talking Touchscreen) low literacy (n = 214): Female 68%; Mean age 56; Race/Ethnicity: African American 72%; Latino 8%; Other 20%; Use computers never 60%; less than daily 31%; daily 9%.
- English (Talking Touchscreen) high literacy (n = 201): Female 66%; Mean age 52; Race/Ethnicity: African American 43%; Latino 11%; Other 46%; Use computers never 24%; less than daily 42%; daily 34%.
- Spanish (Pantalla Parlanchina) low literacy (n = 202): Female 62%; Mean age 52; Race/Ethnicity: African American—Latino 100%; Other—Use computers never 80%; less than daily 12%; daily 8%.
- Spanish (Pantalla Parlanchina) high literacy (n = 201): Female 63%; Mean age 44; Race/Ethnicity: African American—Latino 100%; Other—Use computers never 47%; less than daily 37%; daily 16%.
Bar chart shows the following data in answer to the question: How hard was it for you to use the touchscreen?
- English low literacy (n = 208) Hard/Very Hard 2.8%; Easy 69.7%; Very Easy 27.5%.
- English high literacy (n = 194) Hard/Very Hard 2%; Easy 38.7%; Very Easy 59.3%.
- Spanish low literacy (n = 195) Hard/Very Hard 3.6%; Easy 80.5%; Very Easy 15.9%.
- Spanish high literacy (n = 195) Hard/Very Hard .05%; Easy 72.3%; Very Easy 27.2%.
Note: Odds of "very easy" for high vs. low literacy English = 2.9 (controlling for prior computer use).
English: R01 HS010333 (Hahn, AHRQ/NCI). Spanish: TURSG-02-069-01-PBP (Hahn, American Cancer Society [ACS])
CancerHelp® Patient Education Software
A screenshot of CancerHelp® Patient Education Software. CancerHelp topics 1 of 4. CancerHelp contains reliable information from the National Cancer Institute (NCI) and other sources. Touch a topic at the left to get started. The topics are: diagnosis and treatment; coping with cancer; medication information; cancer Web sites; and find what you’re looking for. Press the "more topics" arrow below left to see other topics. The other topic buttons are: touch here for help; Espaňol/go to beginning; and exit survey.
The logo of the National Cancer Institute and a photo of a woman and child looking at clothing are on the page.
CancerHelp® Talking Touchscreen: Low literacy adaptation of CancerHelp® Patient Education Software
- Information to be included (mostly NCI):
- Cancer information (breast & colorectal cancer).
- Types of treatment (chemotherapy & radiation therapy).
- Nutrition (eating hints).
- Understanding cancer pain.
- Communication with providers.
- Facing forward.
- Organizations to help you.
- Multidisciplinary Advisory Board input (13 medical oncologists, nurses, clinical psychologists, researchers).
Questions and Answers About Radiation Therapy
What is radiation therapy?
Radiation therapy (also called radiotherapy) is a cancer treatment that uses high doses of radiation to kill cancer cells and stop them from spreading. At low doses, radiation is used as an x-ray to see inside your body and take pictures, such as x-rays of your teeth or broken bones. Radiation used in cancer treatment works in much the same way, except that it is given at higher doses.
How is radiation therapy given?
Radiation therapy can be external beam (when a machine outside your body aims radiation at cancer cells) or internal (when radiation is put inside your body, in or near the cancer cells). Sometimes people get both forms of radiation therapy.
A screenshot of CancerHelp® Patient Education Software. The following text is on the screen: "Cancer Care Communication. Radiation Therapy and you—session 1. Questions and answers about radiation therapy. What is radiation therapy? Radiation therapy (also called radiotherapy) is a cancer treatment that uses high doses of radiation to kill cancer cells and stop them from spreading." There are buttons to listen to the page read, dictionary, repeat, main menu, increase and decrease volume, and next. A woman is brushing a girl’s hair.
A screenshot of CancerHelp® Patient Education Software. The following text is on the screen: "Cancer Care Communication. Radiation Therapy and you—session 1. What is radiation therapy? At low doses, radiation is used as an x-ray to see inside your body and take pictures, such as x-rays of your teeth or broken bones. Radiation used in cancer treatment works in much the same way, except that it is given at higher doses." There are buttons to listen to the page read, repeat, main menu, increase and decrease volume, back, and next. Two women are sitting with a young girl.
A screenshot of CancerHelp® Patient Education Software. The following text is on the screen: "Cancer Care Communication. Chemotherapy and you. How to use the slide shows. Below is a "repeat" button with a curved arrow on it. You can touch this button at any time to hear any slide again. Touch the "repeat" button now to see how it works." An arrow points toward the repeat button. There are additional buttons for main menu, back, and next. A man is watching a young boy sitting on a ladder.
The old kiosk in a black and white photo. The kiosk is very simple and streamlined. The user stands at the kiosk. The new kiosk has three screens, each displaying a different photo. The kiosk is in front of a large window with expansive views of a city. It is set up on a large desk with a comfortable chair.
Evaluation of CancerHelp® Talking Touchscreen (8 clinician advisors)
| Overall, how easy or
hard do you think it
will be for your patients
to use this system?
| Very easy
|| Very hard
| n = 4
|| n = 4
|Overall, how much
do you think your
patients will like
using the system?
||Quite a bit
||A little bit
||Not at all
|n = 1
||n = 5
||n = 2
Patient-Provider Communication Module (1)
- NCI "Taking Time" booklet
- 14 topics ranked in importance by Multidisciplinary Expert Advisory Board
- Learning about Cancer & Feeling More in Control (5 pages):
- Learning From Your Health Care Providers.
- Learning About Your Treatment Choices.
- Learning More about Your Cancer.
- Summing Up: Learning about Your Cancer and Regaining Control.
- People in Health Care (describes the roles of each field & how they can help; 4 pages):
- Social workers.
- Patient educators.
- Licensed counselors or other mental health professionals.
- Other people in the hospital (i.e., advocates, discharge workers, volunteers).
Patient-Provider Communication Module (2)
Cancer Care Communication (C3)
Screenshot shows the following text: "Topics for Today: What would you like to discuss with your doctor today? Touch the box next to each topic that you would most like to discuss." The topics are: my cancer, working or daily activities, my treatment, diet and nutrition, symptoms or side-effects, emotions and coping, medications, my family or friends, tests or procedures, what to expect in the future, financial concerns, other.
There is an option to print the page. Next to every line of text is a button to hear the text.
Patient-Provider Communication Module (3)
- Video clips of site physicians.
- Purpose: to encourage patients to use "Topics for Today" checklist and communication modules, especially those who would otherwise have reservations about taking initiative or a more active role in conversations with health care providers.
Doctor: "My name is Dr. ____. This touchscreen that you are using has a lot of important information about your cancer and your treatment. It also has some information that may help you prepare for your visit with your doctor. First, there is some information on communicating with your health care team . . . The second thing I would like to point out is the "Topics for Today" checklist. You can use this checklist to select the most important things that you would like to talk about with your health care providers during each visit..."
- Advisory Board feedback:
"Looks good. Most people would respond favorably. Makes it more personable."
"Physician endorsement may help to stress importance."
"Sounds very promising and user-friendly."
Integrating Two Health IT Applications
- Assessment component for control and intervention patients: Talking Touchscreen (TT) for self-administration of questionnaires.
- Education component for intervention patients only: CancerHelp® patient education software.
- Different programmers and programming languages.
- Stand-alone kiosks and tablet laptops at three clinical sites.
- Programming logic to use Login I.D. to control access.
- Good programmer-to-programmer communication.
- Cell modems to "synch" data between kiosks, tablet laptops and central Web-based server.
Discussion and Implications
- Talking Touchscreen (TT) is a practical, user-friendly method for assessment of patient-reported outcomes.
- CancerHelp® patient education program has been a valued resource since 1994.
- The purpose of integrating these two health information technology applications is to improve access to health information and to enhance the quality of health care communication.
- CancerHelp®—TT meets security requirements in Department of Health & Human Services (HHS) Automated Information Systems Security Handbook and is programmed as a Web-based research application designed for maximum flexibility that could be linked to an electronic medical record (EMR) system in the future.
Funded under AHRQ RFA-HS-07-007, Ambulatory Safety and Quality: Enabling Patient-Centered Care through Health IT.
ENH: Sofia Garcia, PhD, David Cella, PhD, Kathleen Yost, PhD, Sarah Rosenbloom, PhD, Rose Kattezham, MPH, Rachel Hanrahan, MPH, Michael Bass, MS, Irina Kontsevaia, MS, Jennifer Beaumont, MS, Veronica Valenzuela, Yvette Garcia, MEd, and Beatriz Menendez.
CancerHelp: Celia Muench and Ed Miller.
Stroger/Cook Co: Thomas Lad, MD, Elizabeth Marcus, MD, and Michael Mullane, MD.
Creticos/AIMMC: Ann Mauer, MD, and Samir Undevia, MD.
Mt. Sinai: Pam Khosla, MD, and Ervin Hire, MD.
Current as of March 2009
Cancer Care Communication (C3). Slide Presentation from the AHRQ 2008 Annual Conference (Text Version). March 2009. Agency
for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/about/annualmtg08/090908slides/Hahn.htm