title: A consumer register: an acceptable and cost-effective alternative for accessing patient populations.
abstract: Population-based registries are increasingly used to recruit patient samples for research, however, they have several limitations including low consent and participation rates, and potential selection bias. To improve access to samples for research, the utility of a new model of recruitment termed the 'Consumer Register', that allows for direct patient recruitment from hospitals, was examined. This paper reports: (i) consent rates onto the register; (ii) preferred methods and frequency of contact; and (iii) the feasibility of establishing the register, including: (a) cost per person recruited to the register; (b) the differential cost and consent rates of volunteer versus paid data collectors; and (c) participant completion rates.
  
  
  
  A cross-sectional survey was conducted in five outpatient clinics in Australia. Patients were approached by volunteers or paid data collectors and asked to complete a touch-screen electronic survey. Consenting individuals were asked to indicate their willingness and preferences for enrolment onto a research register. Descriptive statistics were used to examine patient preferences and linear regression used to model the success of volunteer versus paid data collectors. The opportunity and financial costs of establishing the register were calculated.
  
  
  
  A total of 1947 patients (80.6 %) consented to complete the survey, of which, 1486 (76.3 %) completed the questionnaire. Of the completers, the majority (69.4 %, or 1032 participants) were willing to be listed on the register and preferred to be contacted by email (50.3 %). Almost 39 % of completers were willing to be contacted three or more times in a 12 month period. The annual opportunity cost of resources consumed by the register was valued at $37,187, giving an opportunity cost per person recruited to the register of $36. After amortising fixed costs, the annual financial outlay was $23,004 or $22 per person recruited to the register. Use of volunteer data collectors contributed to an annual saving of $14,183, however paid data collectors achieved significantly higher consent rates. Successful enrolment onto the register was completed for 42 % of the sample.
  
  
  
  A Consumer Register is a promising and feasible alternative to population-based registries, with the majority of participants willing to be contacted multiple times via low-resource methods such as email. There is an effectiveness/cost trade off in the use of paid versus volunteer data collectors.
authors.affiliation: Health Behaviour Research Group, Priority Research Centre in Health Behaviour and Hunter Medical Research Institute, HMRI Building, University of Newcastle, Callaghan, New South Wales, 2308, Australia. Jamie.Bryant@newcastle.edu.au.
authors.forename: Jamie
authors.initials: J
authors.lastname: Bryant
authors.affiliation: Health Behaviour Research Group, Priority Research Centre in Health Behaviour and Hunter Medical Research Institute, HMRI Building, University of Newcastle, Callaghan, New South Wales, 2308, Australia.
authors.forename: Rob
authors.initials: R
authors.lastname: Sanson-Fisher
authors.affiliation: Health Behaviour Research Group, Priority Research Centre in Health Behaviour and Hunter Medical Research Institute, HMRI Building, University of Newcastle, Callaghan, New South Wales, 2308, Australia.
authors.forename: Elizabeth
authors.initials: E
authors.lastname: Fradgley
authors.affiliation: Health Behaviour Research Group, Priority Research Centre in Health Behaviour and Hunter Medical Research Institute, HMRI Building, University of Newcastle, Callaghan, New South Wales, 2308, Australia.
authors.forename: Breanne
authors.initials: B
authors.lastname: Hobden
authors.affiliation: Health Behaviour Research Group, Priority Research Centre in Health Behaviour and Hunter Medical Research Institute, HMRI Building, University of Newcastle, Callaghan, New South Wales, 2308, Australia.
authors.forename: Alison
authors.initials: A
authors.lastname: Zucca
authors.affiliation: Distributed Computing Research Group; School of Electrical Engineering & Computer Science; Priority Research Centre for Health Behaviour; University of Newcastle, New South Wales, 2308, Australia.
authors.forename: Frans
authors.initials: F
authors.lastname: Henskens
authors.affiliation: Health Research Economics, Hunter Medical Research Institute, New Lambton Heights, New South Wales, 2305, Australia.
authors.forename: Andrew
authors.initials: A
authors.lastname: Searles
authors.affiliation: Hunter Medical Research Institute, New Lambton Heights, New South Wales, 2305, Australia.
authors.forename: Brad
authors.initials: B
authors.lastname: Webb
authors.affiliation: Hunter Medical Research Institute, New Lambton Heights, New South Wales, 2305, Australia.
authors.forename: Christopher
authors.initials: C
authors.lastname: Oldmeadow
mesh_terms: D003256:Community Participation / Q000191:economics / Q000379:methods / Q000706:statistics & numerical data; D003362:Cost-Benefit Analysis; D003430:Cross-Sectional Studies; D005240:Feasibility Studies; D006801:Humans; D010045:Outpatients / Q000706:statistics & numerical data*; D010358:Patient Participation / Q000191:economics / Q000706:statistics & numerical data*; D018579:Patient Selection; D012042:Registries / Q000706:statistics & numerical data*; D015203:Reproducibility of Results; D011795:Surveys and Questionnaires
keywords: Consumer participation; Patient recruitment; Research register