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.

1. E-patients Communities and Chronic Illness: Needs assessment and design implications of breast cancer, multiple sclerosis and Marfan syndrome health e-communities

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

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%