E-patients Communities and Chronic Illness


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Brodeur Parnters and UNC School of Social Work -- Needs assessment and design implications of breast cancer, multiple sclerosis and Marfan syndrome health e-communities. Posted on Regulations.gov public docket FDA-2009-N-0441 on 12/10/09.

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  • the aim of this study was to explore commonalities and diver- gences in seeking online health information among patients in three chronic dis- ease e-communities: metastasized breast cancer, multiple sclerosis, and Marfan syndrome.
  • E-patients Communities and Chronic Illness

    1. 1. E-patients Communities and Chronic Illness: Needs assessment and design implications of breast cancer, multiple sclerosis and Marfan syndrome health e-communities
    2. 2. Exploratory Study: Aims <ul><li>Understand e-health information and support seeking behavior among diverse types of chronic disease patients </li></ul><ul><li>Assess patients’ preferences for Web 2.0 resources </li></ul><ul><li>Inform design of future web-based support communities </li></ul>
    3. 3. Method <ul><li>Interactive web-based survey (May-June 2008) </li></ul><ul><li>Recruitment targets: approximately 12 e-health communities, 9 of which responded to our initial request </li></ul><ul><li>Convenience sample: Members of 3 e-health communities: metastatic breast cancer (n=62), multiple sclerosis (n=31), and Marfan syndrome (n=35) </li></ul><ul><ul><li>154 unique starts/ 127 completed (82%) </li></ul></ul><ul><li>Analyses </li></ul><ul><ul><li>Whole group descriptive analyses </li></ul></ul><ul><ul><li>Planned between group comparisons </li></ul></ul>
    4. 4. Survey Topics <ul><li>Participant characteristics </li></ul><ul><ul><li>Age, gender, education, employment status,, support network characteristics </li></ul></ul><ul><li>Self reports of chronic condition(s) and health self ratings </li></ul><ul><li>Recent Internet searches for information on own chronic condition(s) in past 30 days </li></ul><ul><li>Ease or difficulty finding information on </li></ul><ul><ul><li>Treatments, information from experts, health-related support, and other relevant types of information </li></ul></ul><ul><li>Activities patients would like to be able to do online to enhance their coping with chronic condition(s) </li></ul><ul><li>Willingness to have personal information shared </li></ul><ul><li>Preferences for different kinds of web functionality </li></ul>
    5. 5. Convenience sample tapped a wide range of chronic illness experiences <ul><li>Relatively common--rare diseases </li></ul><ul><li>Risk factors: environmental--heritable </li></ul><ul><li>Ages of onset: birth--later adulthood </li></ul><ul><li>Systems affected </li></ul><ul><li>Expected life spans </li></ul><ul><li>Sources of uncertainty </li></ul><ul><ul><li>Difficulties in diagnosing </li></ul></ul><ul><ul><li>Patterns of disease progression </li></ul></ul>
    6. 6. Sample characteristics Characteristics % (N=127) Female 96% Adults: 40-59 y,o. 62% Euro-American 96% Education: High school diploma or higher 98% Employment Full time 31.0% Part time 9.5% Unemployed 29.4% Retired/Disabled 31.0% Health status Self rating: Fair 54.4% Chronic disease co-morbidity 39.3% >1 diagnosis
    7. 7. Commonalities in e-health information and support seeking experiences <ul><li>Few significant differences in: </li></ul><ul><ul><li>Health information seeking experiences </li></ul></ul><ul><ul><ul><li>Overall, Marfan patients reported somewhat more difficulty finding the information they needed </li></ul></ul></ul><ul><ul><li>E-health community support </li></ul></ul><ul><ul><li>Desire to find true patient peers </li></ul></ul><ul><ul><li>Interest in sharing “patient wisdom” with broader healthcare community </li></ul></ul>
    8. 8. Results: Health information seeking N=127 Item (n=number who searched) n Fairly/Very Easy to Find % Fairly/Very Hard to Find % Current treatments 111 77.5% 22.5 % Treatment side effects 111 74.8% 25.2 % Managing multiple chronic conditions 66 57.6% 42.4% Recommendations for health care providers 53 28.3% 71.7% Clinical trials 51 62.7% 37.3%
    9. 9. Results: Searching for different types of online health information and resources ( N=127) Item ( n=number who searched ) n Fairly/Very Easy to Find % Fairly/Very Hard to Find % Comprehensive health info websites 110 84% 16% Scientific articles in online journals 84 90% 10% News articles 60 69% 31% Products and services 54 57% 44% Health insurance 38 21% 79% Doctors’ presentations on the Web 33 43% 57%
    10. 10. Social Contexts of e-Health Seeking: Sources of Support (N=127) Other sources: neighbors, coworkers, in-home health care providers, unspecified others
    11. 11. Results: Searching for Online Social Support (N=127) Item (n=number who searched)* n Fairly/Very Easy to Find % Fairly/Very Hard to Find % HeCs for my chronic condition 105 81% 19% People going through same experiences 103 19% 81% HeCs for my combination of multiple chronic conditions 46 65% 35% People coping with depression and other chronic conditions 46 65% 35%
    12. 12. Interest in Apomediated Activities (N=127) Activity (n=number of respondents) n Already doing % Interested % Unsure or Uninterested % Share knowledge with a broader e-health community 110 83% 9% 8% Buy products 110 17% 42% 41% Write or contribute to a blog 112 15% 15% 70% Create personal health profile 110 14% 32% 55% Create detailed ehealth record 110 13% 40% 48% Rate HC providers 110 7% 59% 34%
    13. 13. Limitations <ul><li>Small, convenience sample </li></ul><ul><li>Pilot survey </li></ul><ul><li>Sources of bias: gender, race, education </li></ul><ul><li>Participants were all members of e-health communities </li></ul><ul><li>Did not probe on existing social networks, Twitter, other social media sites </li></ul>
    14. 14. Conclusions <ul><li>Health seeking behavior was similar across diverse chronic disease groups </li></ul><ul><li>Patients in all groups want more specific, individualized and timely information </li></ul><ul><li>Most patients were interested in participating in apomediated activities, but fewer were doing them </li></ul>
    15. 15. Verbatims: Participants value what they can learn from each other <ul><li>Patients want : “sites that are collecting and publicizing patient recommendations for improvement of care”… “patient recommendations for doctors”… “data on underreported side effects.” </li></ul><ul><li>Patients value: “I have found the unedited, uncensored and non-statistical (e.g. anecdotal info available on [my HeC] to be as helpful or more helpful than the general sites (e.g, WebMD) because it is first hand, individual and specific. </li></ul><ul><li>Patients know the difference: “There is a glut of inspirational sites [with illness stories]. I would like to see sites that are collecting and publicizing patient recommendations for improving care…and other advocacy.” </li></ul>
    16. 16. Patients recognize limitations, risks of “patient wisdom” and e-health resources <ul><li>“ I don’t believe privacy could be protected [with health record data] but I would still be willing to participate.” </li></ul><ul><li>“ You will have major issues of selection bias. People who post are very different from those who don’t.” </li></ul>
    17. 17. Implications for health e-community designs <ul><li>Information sharing opportunities with “true patient peers” </li></ul><ul><ul><li>Searchable, rich personal profiles </li></ul></ul><ul><ul><li>Presence functionality to detect members “like me” </li></ul></ul><ul><ul><li>Integration of social networks with PHR/EMR </li></ul></ul><ul><ul><li>Enablers of recruitment and formation of subgroups (e.g., combinations of chronic conditions) </li></ul></ul>
    18. 18. Implications for health e-community designs <ul><li>Improved access to current research findings </li></ul><ul><ul><li>Public access to peer-reviewed literature </li></ul></ul><ul><ul><li>Multimedia formats for communicating health information (i.e., YouTube videos, interactive webinars) </li></ul></ul><ul><ul><li>Access to research experts (webinars, Q&A) </li></ul></ul><ul><li>Integrated research tools </li></ul><ul><ul><li>HeC member-initiated research </li></ul></ul><ul><ul><li>Clinical research studies </li></ul></ul>
    19. 19. Implications for health e-community designs <ul><li>Information about and access to relevant products, services, and treatments </li></ul><ul><ul><li>HCP rating systems </li></ul></ul><ul><ul><li>Clinical trials </li></ul></ul><ul><ul><li>Contextual e-advertising </li></ul></ul>
    20. 20. Questions, comments or feedback? <ul><li>All welcome! </li></ul><ul><li>Email: [email_address] </li></ul><ul><ul><ul><ul><ul><li> ameier@email.unc.edu </li></ul></ul></ul></ul></ul><ul><ul><ul><ul><li>Thank you! </li></ul></ul></ul></ul><ul><ul><ul><ul><li>Andrea Meier, Bret Shaw, Judy Feder, & Eulàlia Puig Abril </li></ul></ul></ul></ul>