What Do People Affected by Cancer Think about Electronic Health Information Exchange? Results from the 2010 LIVESTRONG Electronic Health Information Exchange Survey and the 2008 Health Information National Trends Survey E.B. Beckjord (University of Pittsburgh); R. Rechis (LIVESTRONG); S. Nutt (LIVESTRONG); L. Shulman (Dana Farber Cancer Institute); B. Hesse (National Cancer Institute) BACKGROUND Assisted Telephone Interview (n=4092) with responses from a » About half of the American public viewed these activities as » Across the entire study sample, respondents expressed high mailed, self-administered paper and pencil survey (n=3582). “very important,” while percentages among the LIVESTRONG confidence that EHIE would improve the quality of their health» Policy and practice related to electronic health information » HINTS items that measured perspectives on the importance of survey respondents ranged from 82% to 68%. care. exchange (EHIE) is rapidly changing, most notably affected by EHIE and respondents’ willingness to share their electronic » Survey respondents were also willing to share their anonymous implementation of the Health Information Technology for health information for the purposes of research were used in the health information for the purposes of research. CONCLUSIONS Economic and Clinical Health (HITECH) Act of 2009. present study. » Nearly one-third of the American public “strongly agreed” with» A better understanding of patient EHIE attitudes and this practice. » Respondents to the LIVESTRONG EHIE survey showed a strong preferences is needed to keep EHIE policy and practice Analytic Approach » More than half of respondents to the LIVESTRONG survey did predilection toward wanting to obtain their own medical patient-centered .  » To appreciate perspectives on EHIE across the cancer trajectory, as well. information electronically and for endorsing EHIE between their» People affected by cancer offer an excellent model for studying results of the LIVESTRONG EHIE survey are presented for four providers. Table 2 Perceptions of How Electronic Health Information Exchange Will Affect Care. perspectives on healthcare initiatives, such as EHIE, across a distinct groups: » Willingness to share personal data for research was highest disease trajectory .  • people with a personal history of cancer who are currently Survivors on treatment Living with cancer as a chronic illness Post-treatment survivors Health care provider/ professional No personal history of cancer among those with a personal history of cancer and lower among on-treatment; Care will improve Care will stay the same 86.3% 11.2% 84.4% 12.9% 85.9% 11.2% 84.5% 11.4% 84.5% 11.8% LIVESTRONG survey respondents without a personal history of METHODS • people with a personal history of cancer who have finished Care will worsen 2.6% 2.7% 2.9% 4.0% 3.8% cancer and the general population. primary treatment; » When it came to discussing the perceived importance of LIVESTRONG EHIE Survey • individuals living with cancer as a chronic illness; and » Nearly all respondents “strongly agreed” that privacy and functional capabilities of EHRs, respondents to the» In April 2010, LIVESTRONG fielded an electronic survey on • people with no personal history of cancer. security are important; more than 70% wanted EHRs to make LIVESTRONG EHIE survey supported healthcare providers to EHIE to registered constituents through email, Facebook®, and » Where the LIVESTRONG survey was harmonized with HINTS, health information sharing with providers more convenient for share data, provided that data sharing occurs in a private, Twitter® and posted a blog with a link to the survey on the comparisons are provided for nationally representative patients and for multiple health care providers to be able to secure, and confidential way. Avon/Love Army of Women website. estimates. access the patient’s EHR. » These findings suggest that the needs for and preferences» As of August 2010, 8,564 completed the survey, 8,411 of whom » Most LIVESTRONG EHIE survey respondents wanted the ability related to EHIE among people touched by cancer may be greater were included in the present study (respondents who did not RESULTS to enter their own reports of their physical health into the EHR, than general opinion polls of the public at large. report sociodemographic data were excluded; n=153). Table 1 Sociodemographic Characteristics and Views on EHIE. and nearly half want the same capability for reports of their» The LIVESTRONG survey included content in three areas: Survivors on Living with cancer Post-treatment No personal General adult emotional health. • perspectives on the importance of EHIE and its potential treatment (n=433) as a chronic illness (n=298) survivors (n=2343) history of cancer (n=5337) population HINTS (n=7674) impact on quality of care; Age 66.7% between 68.5% between 71.7% between 65.8% between 52% between Figure 1 Perceived Importance of Different Functional Capabilities of EHRs REFERENCES 40 and 64 40 and 64 40 and 64 40 and 64 35 and 64 • respondents’ willingness to share their electronic health Gender 70.5% female 65.7% female 69.6% female 56.6% female 51.4% female Percent who “strongly agree” that the functional capability should be part of an EHR Race 94.0% White 95.0% White 93.1% White 88.9% White 76.1% White 1. Simborg, D.W., Consumer empowerment versus consumer populism in healthcare data for the purposes of research; and Number of visits to a health care provider in the past 12 85.0% 82.4% 55.3% 37.0% 25.5% Allow patients to enter information about their emotional or mental health needs and concerns for healthcare providers to review IT. JAMIA, 2010. 17: p. 370-372. • preferences related to specific functional capabilities of months “Very important” that my five or more times five or more times five or more times five or more times five or more times Allow patients to enter information about their 82.1% 75.4% 68.7% 47.9% EHRs. healthcare providers are able to 79.8% physical health for healthcare providers to review 2. Rowland, J.H., Bellizzi, K.M., Cancer Survivors and Survivorship Research : A share my medical information with each other electronically Require approval from the patient BEFORE Reflection on Todays Successes and Tomorrows Challenges. Hematology/Oncology “Very important” that I can get my own medical information information is shared among healthcare providers Clinics of North America, 2008. 22(2): p. 181-200. HINTS 2008 electronically 75.1% 81.1% 70.8% 69.5% 51.7% Allow for different healthcare providers to “Strongly agree” that scientists» HINTS (http://hints.cancer.gov) is a biennial survey fielded by the doing research should be able access information about a patient that could help them to improve care for that patient 3. Nelson, D.E., et al., The Health Information National Trends Survey (HINTS): to review my medical 59.4% 70.4% 60.0% 55.9% 32.4% Development, Design, and Dissemination. Journal of Health Communication, 2004. National Cancer Institute that provides publicly available, information if the information cannot be linked to me Make information sharing with healthcare providers more convenient for patients 9(5): p. 443-460. nationally representative data on the adult American public’s personally. attitudes and knowledge related to cancer prevention and Be private, secure, and confidential 4. Finney Rutten, L., et al., Building the Evidence Base in Cancer Communication, G.L. Kreps, Editor 2010, Hampton Press: Cresskill, NJ. control, with an emphasis on health information technology [3, 4] . Respondents to the LIVESTRONG EHIE survey attached 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%» The third iteration of the survey was fielded between January significant value to their health care providers being able to No personal history of cancer Post-treatment survivors Living with cancer as a chronic illness Survivors on treatment and May 2008 using a dual-frame sample design combining share electronic health information and to their ability to responses from a traditional Random Digit Dial, Computer retrieve their own health information electronically.