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THU0622 Patient-centered aging biobanks - a survey on public perceptions and patient choice among rheumatology outpatients
  1. JV Cordeiro1,
  2. A Fernandes2,
  3. CD Lopes3,
  4. G Victorino4,
  5. P Lobato Faria1,
  6. MJ Cercas4,
  7. JC Branco5,
  8. FM Pimentel-Santos3,5
  1. 1Centro de Investigação em Saúde Pública (CISP), Escola Nacional de Saúde Pública
  2. 2CICS.NOVA – Centro Interdisciplinar de Ciências Sociais, Faculdade de Ciências Sociais e Humanas, NOVA University of Lisbon
  3. 3Rheumatology, CHLO, Hospital Egas Moniz
  4. 4NOVA Information Management School (NOVAIMS)
  5. 5CEDOC, NOVA Medical School|Faculdade Ciências Médicas, NOVA University of Lisbon, Lisboa, Portugal

Abstract

Background Biobanks for research (BBR) are organized repositories of biological materials and associated health information with enormous potential and value for scientific research. In consonance with increasing attention to healthy aging research, BBR specifically oriented to chronic diseases and aging populations have gathered heightened attention. Public perceptions and patient choices are key to design, develop and implement patient-centered BBR. Public awareness, education and involvement are confidence building and unequivocally lead to higher participation in scientific enterprises.

Objectives To assess patient awareness, perception and choices regarding aging biobanking activities.

Methods We developed and applied a standard anonymous questionnaire to rheumatology terciary outpatients, aged 50 or older, between March-October 2016. Demographic data and perceptions about biobanking were collected. Data analysis was performed using Stata 14® software.

Results We obtained a total of 131 valid responses [age (min-max, 50–93), mean (64); sex ratio (M/F) (40/91, 44%), education years (min-max, 0–20), mean (8.5)]. 69% of respondents did not know the specific term “biobank” but 57% were aware about the possibility of donating their biological material for research purposes. Furthermore, 77% of respondents indicated they were willing to contribute with their biological material to BBR, stating they had no particular preference whether these infrastructures were of private or public nature. However, they expressed a clear preference for these to be based at scientific research institutes (50%), instead of hospitals (23%), universities (16%) or biotechnology companies (7%). Moreover, respondents highlighted diferent requirements for their participation with anonymity (31%) and confidentiality (27%) ranking as top priorities. Most importantly, a majority of respondents (70%) expressed their agreement with a biobank exclusively dedicated to the study of aging, considering that people of older ages have higher disease burdens and that such research infrastructures and practices expressed respect for the particular problems of the elderly (Figure).

Conclusions Our study constitutes a comprehensive assessment of public perceptions and patient choices regarding biobanks for aging research purposes among rheumatology outpatients. Although awareness is still suboptimal, BBR are highly regarded health infrastructures with enormous potential for further patient-centered development.

Disclosure of Interest None declared

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