Participatory surveillance of hypoglycemia and harms in an online social network

JAMA Internal Medicine

Volumn 173, Issue 5, 2013, Pages 345-351

  Weitzman, Elissa R ^a,b   Kelemen, Skyler ^a   Quinn, Maryanne ^a,b   Eggleston, Emma M ^b,c   Mandl, Kenneth D ^a,b  

^a BOSTON CHILDREN S HOSPITAL   (United States)

^b HARVARD MEDICAL SCHOOL   (United States)

^c BRIGHAM AND WOMEN S HOSPITAL   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

GLUCOSE;

ACCIDENT; ADOLESCENT; ADULT; ARTICLE; AWARENESS; DISEASE SEVERITY; DISEASE SURVEILLANCE; FEMALE; HARM REDUCTION; HUMAN; HYPOGLYCEMIA; INSULIN DEPENDENT DIABETES MELLITUS; INTERNET; MAJOR CLINICAL STUDY; MALE; ONLINE SYSTEM; PERSONAL EXPERIENCE; PRIORITY JOURNAL; SELF REPORT; SOCIAL NETWORK;

ADOLESCENT; ADULT; COST OF ILLNESS; DIABETES MELLITUS, TYPE 1; FEMALE; HUMANS; HYPOGLYCEMIA; INSULIN; MALE; ONLINE SYSTEMS; OUTCOME ASSESSMENT (HEALTH CARE); PATIENT PARTICIPATION; POPULATION SURVEILLANCE; QUALITY OF LIFE; RISK ASSESSMENT; SEVERITY OF ILLNESS INDEX; SICKNESS IMPACT PROFILE; SOCIAL PARTICIPATION; SOCIAL SUPPORT; UNITED STATES;

EID: 84874891944     PISSN: 21686106     EISSN: None     Source Type: Journal    
DOI: 10.1001/jamainternmed.2013.2512     Document Type: Article

References (49)

1. Cryer PE, Davis SN, Shamoon H. Hypoglycemia in diabetes. Diabetes Care. 2003; 26(6): 1902-1912.
2. Cox DJ, Penberthy JK, Zrebiec J, et al. Diabetes and driving mishaps: frequency and correlations from a multinational survey. Diabetes Care. 2003;26(8): 2329-2334.
3. Rhoads GG, Orsini LS, Crown W, Wang S, Getahun D, Zhang Q. Contribution of hypoglycemia to medical care expenditures and short-term disability in employees with diabetes. J Occup Environ Med. 2005;47(5): 447-452.
4. Marrett E, Radican L, Davies MJ, Zhang Q. Assessment of severity and frequency of self-reported hypoglycemia on quality of life in patients with type 2 diabetes treated with oral antihyperglycemic agents: a survey study. BMC Res Notes. 2011;4: 251.
5. Gerstein HC, Miller ME, Genuth S, et al ACCORD Study Group. Long-term effects of intensive glucose lowering on cardiovascular outcomes. N Engl J Med. 2011;364(9): 818-828.
6. Moore TJ, Cohen MR, Furberg CD. Serious adverse drug events reported to the Food and Drug Administration, 1998-2005. Arch Intern Med. 2007;167(16): 1752-1759.
7. Budnitz DS, Lovegrove MC, Shehab N, Richards CL. Emergency hospitalizations for adverse drug events in older Americans. N Engl J Med. 2011;365 (21): 2002-2012.
8. Simeone JC, Quilliam BJ. Predictors of emergency department and outpatient visits for hypoglycemia in type 2 diabetes: an analysis of a large US administrative claims database. Ann Pharmacother. 2012;46(2): 157-168.
9. Levine BS, Anderson BJ, Butler DA, Antisdel JE, Brackett J, Laffel LM. Predictors of glycemic control and short-term adverse outcomes in youth with type 1 diabetes. J Pediatr. 2001;139(2): 197-203.
10. Booth GL, Hux JE, Fang J, Chan BT. Time trends and geographic disparities in acute complications of diabetes in Ontario, Canada. Diabetes Care. 2005;28 (5): 1045-1050.
11. Garber A, Marre M, Blonde L, et al. Influence of initial hyperglycaemia, weight and age on the blood glucose lowering efficacy and incidence of hypoglycaemic symptoms with a single-tablet metformin-glibenclamide therapy (Glucovance) in type 2 diabetes. Diabetes Obes Metab. 2003;5(3): 171-179.
12. Holstein A, Plaschke A, Egberts EH. Lower incidence of severe hypoglycaemia in patients with type 2 diabetes treated with glimepiride versus glibenclamide. Diabetes Metab Res Rev. 2001;17(6): 467-473.
13. Pogach L, Aron D. Balancing hypoglycemia and glycemic control: a public health approach for insulin safety. JAMA. 2010;303(20): 2076-2077.
14. Saaddine JB, Engelgau MM, Beckles GL, Gregg EW, Thompson TJ, Narayan KM. A diabetes report card for the United States: quality of care in the 1990s. Ann Intern Med. 2002;136(8): 565-574.
15. Li C, Balluz LS, Okoro CA, et al Centers for Disease Control and Prevention (CDC). Surveillance of certain health behaviors and conditions among states and selected local areas - Behavioral Risk Factor Surveillance System, United States, 2009. MMWR Surveill Summ. 2011;60(9): 1-250.
16. Budnitz DS, Layde PM. Outpatient drug safety: new steps in an old direction. Pharmacoepidemiol Drug Saf. 2007;16(2): 160-165.
17. Wysowski DK, Swartz L. Adverse drug event surveillance and drug withdrawals in the United States, 1969-2002: the importance of reporting suspected reactions. Arch Intern Med. 2005;165(12): 1363-1369.
18. Brajovic S, Piazza-Hepp T, Swartz L, Dal Pan G. Quality assessment of spontaneous triggered adverse event reports received by the Food and Drug Administration. Pharmacoepidemiol Drug Saf. 2012;21(6): 565-572.
19. Weitzman ER, Cole E, Kaci L, Mandl KD. Social but safe? quality and safety of diabetes-related online social networks. J Am Med Inform Assoc. 2011;18 (3): 292-297.
20. Fox S, Purcell K. Chronic Disease and the Internet. Washington, DC: Pew Research Center; 2010.
21. Cobert B, Silvey J. The Internet and drug safety: what are the implications for pharmacovigilance? Drug Saf. 1999;20(2): 95-107.
22. Weitzman ER, Kelemen S, Mandl KD. Surveillance of an online social network to assess population-level diabetes health status and healthcare quality. Online J Publ Health Inform. 2011;3(3): 1-7.
23. Hand E. Citizen science: people power. Nature. 2010;466(7307): 685-687.
24. van Noort SP, Muehlen M, Rebelo de Andrade H, Koppeschaar C, Lima Lourenço JM, Gomes MG. Gripenet: an internet-based system to monitor influenza-like illness uniformly across Europe. Euro Surveill. 2007;12(7):E5-E6.
25. Brownstein JS, Freifeld CC, Madoff LC. Digital disease detection - harnessing the Web for public health surveillance. N Engl J Med. 2009;360(21): 2153-2155, 2157.
26. Weitzman ER, Kaci L, Mandl KD. Sharing medical data for health research: the early personal health record experience. J Med Internet Res. 2010;12(2):e14.
27. Zulman DM, Nazi KM, Turvey CL, Wagner TH, Woods SS, An LC. Patient interest in sharing personal health record information: a web-based survey. Ann Intern Med. 2011;155(12): 805-810.
28. Kaye J, Curren L, Anderson N, et al. From patients to partners: participantcentric initiatives in biomedical research. Nat Rev Genet. 2012;13(5): 371-376.
29. Weitzman ER, Kelemen S, Kaci L, Mandl KD. Willingness to share personal health record data for care improvement and public health: a survey of experienced personal health record users. BMC Med Inform Decis Mak. 2012;12(1): 39.
30. Frost J, Okun S, Vaughan T, Heywood J, Wicks P. Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res. 2011;13(1):e6.
31. Weitzman ER, Adida B, Kelemen S, Mandl KD. Sharing data for public health research by members of an international online diabetes social network. PLoS One. 2011;6(4):e19256.
32. Bonds DE, Kurashige EM, Bergenstal R, et al ACCORD Study Group. Severe hypoglycemia monitoring and risk management procedures in the Action to Control Cardiovascular Risk in Diabetes (ACCORD) trial. Am J Cardiol. 2007;99 (12A): 80i-89i.
33. American Diabetes Association. Standards of medical care in diabetes - 2012. Diabetes Care. 2012;35(suppl 1):S11-S63.
34. D'Agostino RB Jr. Propensity score methods for bias reduction in the comparison of a treatment to a non-randomized control group. Stat Med. 1998;17(19): 2265-2281.
35. Pedersen-Bjergaard U, Pramming S, Heller SR, et al. Severe hypoglycaemia in 1076 adult patients with type 1 diabetes: influence of risk markers and selection. Diabetes Metab Res Rev. 2004;20(6): 479-486.
36. Duckworth W, Abraira C, Moritz T, et al VADT Investigators. Glucose control and vascular complications in veterans with type 2 diabetes. N Engl JMed. 2009; 360(2): 129-139.
37. Bolli GB.Howto ameliorate the problem of hypoglycemia in intensive as well as nonintensive treatment of type 1 diabetes. Diabetes Care. 1999;22(suppl 2):B43-B52.
38. Kushner P. Minimizing the risk of hypoglycemia in patients with type 2 diabetes mellitus. Diabetes Metab Syndr Obes. 2010;3: 49-53.
39. Cemeroglu AP, Stone R, Kleis L, Racine MS, Postellon DC, Wood MA. Use of a real-time continuous glucose monitoring system in children and young adults on insulin pump therapy: patients' and caregivers' perception of benefit. Pediatr Diabetes. 2010;11(3): 182-187.
40. Chase HP, Kim LM, Owen SL, et al. Continuous subcutaneous glucose monitoring in children with type 1 diabetes. Pediatrics. 2001;107(2): 222-226.
41. Fiallo-Scharer R, Cheng J, Beck RW, et al Juvenile Diabetes Research Foundation Continuous Glucose Monitoring Study Group. Factors predictive of severe hypoglycemia in type 1 diabetes: analysis from the Juvenile Diabetes Research Foundation continuous glucose monitoring randomized control trial dataset. Diabetes Care. 2011;34(3): 586-590.
42. Kashmer L, Clarke W, Gurka M, Elchuri S, Nyer M, Gonder-Frederick L. Predictors of parental interest in continuous glucose monitoring for children with type 1 diabetes. Diabetes Technol Ther. 2009;11(6): 373-378.
43. Nordfeldt S, Ludvigsson J. Adverse events in intensively treated children and adolescents with type 1 diabetes. Acta Paediatr. 1999;88(11): 1184-1193.
44. Greene JA, Choudhry NK, Kilabuk E, Shrank WH. Online social networking by patients with diabetes: a qualitative evaluation of communication with Facebook. J Gen Intern Med. 2011;26(3): 287-292.
45. Fox S. Peer-to-Peer Healthcare. Washington, DC: Pew Research Center; 2011.
46. Frost JH, Massagli MP. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another's data. J Med Internet Res. 2008;10(3):e15.
47. Seeman N. Web 2.0 and chronic illness: new horizons, new opportunities. Healthc Q. 2008;11(1): 104-110.
48. Chou WY, Hunt YM, Beckjord EB, Moser RP, Hesse BW. Social media use in the United States: implications for health communication. JMed Internet Res. 2009; 11(4):e48.
49. Idriss SZ, Kvedar JC, Watson AJ. The role of online support communities: benefits of expanded social networks to patients with psoriasis. Arch Dermatol. 2009; 145(1): 46-51.