title: Patients' motives for participating in active post-marketing surveillance.
abstract: OBJECTIVE
  Web-based intensive monitoring is a method to actively collect information about adverse drug reactions (ADRs) using patients as a source of information. To date, little is known about patients' motivation to participate in this kind of active post-marketing surveillance (PMS). Increased insight in this matter can help us to better understand and interpret patient reported information, and it can be used for developing and improving patient-based pharmacovigilance tools. The aim of this study is to gain insight into patients' motives for participating in active PMS and investigate their experiences with such a system.
  
  
  METHODS
  A mixed model approach combining qualitative and quantitative research methods was used. For both parts, patients participating in a web-based intensive monitoring study about the safety of anti-diabetic drugs (excluding insulins) were used. A questionnaire was developed based on the results from qualitative interviews. The data collected through the questionnaires was analysed with descriptive statistics. Relations between patient characteristics and motives were analysed using a t-test or a Chi-squared test.
  
  
  RESULTS
  1332 (54.6%) patients responded to the questionnaire. The main motive for participation was altruism. Often experiencing ADRs or negative experiences with drugs were not important motives. The patient's gender played a role in the different motives for participation. For men, potential future personal benefit from the results was more important than for women. The overall opinion about the system was positive.
  
  
  CONCLUSIONS
  The knowledge that patients participate in this kind of research from an altruistic point of view may strengthen patient involvement in pharmacovigilance.
authors: Netherlands Pharmacovigilance Centre Lareb, 's-Hertogenbosch, The Netherlands. l.harmark@lareb.nl
authors: Linda
authors: L
authors: Härmark
authors: Miguel
authors: M
authors: Lie-Kwie
authors: Lisette
authors: L
authors: Berm
authors: Han
authors: H
authors: de Gier
authors: Kees
authors: K
authors: van Grootheest
mesh_terms: D000293:Adolescent; D000328:Adult; D016907:Adverse Drug Reaction Reporting Systems; D000368:Aged; D000533:Altruism; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007004:Hypoglycemic Agents / Q000009:adverse effects; D007223:Infant; D020407:Internet; D008297:Male; D008875:Middle Aged; D009042:Motivation; D010342:Patient Acceptance of Health Care / Q000523:psychology*; D011358:Product Surveillance, Postmarketing; D011795:Surveys and Questionnaires; D055815:Young Adult
chemical_list: D007004:Hypoglycemic Agents