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E-patients Communities and  Chronic Illness: Needs assessment and design implications of breast cancer, multiple sclerosis and Marfan syndrome health e-communities
Exploratory Study: Aims ,[object Object],[object Object],[object Object]
Method ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Survey Topics ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Convenience sample tapped a wide range of chronic illness experiences ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
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
Commonalities in e-health information and support seeking experiences ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
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%
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%
Social Contexts of e-Health Seeking: Sources of Support  (N=127) Other sources: neighbors, coworkers, in-home health care providers, unspecified others
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%
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%
Limitations ,[object Object],[object Object],[object Object],[object Object],[object Object]
Conclusions ,[object Object],[object Object],[object Object]
Verbatims: Participants value what they can learn from each other ,[object Object],[object Object],[object Object]
Patients recognize limitations, risks of “patient wisdom” and e-health resources ,[object Object],[object Object]
Implications for health e-community designs ,[object Object],[object Object],[object Object],[object Object],[object Object]
Implications for health e-community designs ,[object Object],[object Object],[object Object],[object Object],[object Object],[object Object],[object Object]
Implications for health e-community designs ,[object Object],[object Object],[object Object],[object Object]
Questions, comments or feedback? ,[object Object],[object Object],[object Object],[object Object],[object Object]

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E-patients Communities and Chronic Illness

  • 1. E-patients Communities and Chronic Illness: Needs assessment and design implications of breast cancer, multiple sclerosis and Marfan syndrome health e-communities
  • 2.
  • 3.
  • 4.
  • 5.
  • 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.
  • 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. 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. Social Contexts of e-Health Seeking: Sources of Support (N=127) Other sources: neighbors, coworkers, in-home health care providers, unspecified others
  • 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. 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.
  • 14.
  • 15.
  • 16.
  • 17.
  • 18.
  • 19.
  • 20.

Editor's Notes

  1. 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.