Oral Presentation ARA-NSW 2020 - 42nd Annual NSW Branch Meeting

Patient perspectives on biobanking and data-linkage for rheumatic diseases (#2)

Abhishikta Dey 1 2 3 , Marita Cross 4 5 , Tom Lynch 4 5 , Carlos El-Haddad 3 6 , Lyn March 1 4 5
  1. Rheumatology, Royal North Shore Hospital, Sydney
  2. University of New South Wales, Sydney
  3. Rheumatology, Liverpool Hospital, Liverpool
  4. University of Sydney, Sydney
  5. Institute of Bone and Joint Research, Faculty of Medicine and Health, University of Sydney, Sydney
  6. School of Medicine, Western Sydney University, Sydney

Background/Purpose

A complex interplay of genetic and environmental factors is thought to underlie rheumatic diseases. Biobanking (prospective collection of human biospecimens and linking to health data) will be necessary for identifying biomarkers which may play critical roles in predicting, managing and preventing rheumatic diseases. Engagement with patients and the public is required for the success of biobanking endeavours.

To our knowledge there are no qualitative studies investigating the attitudes of patients with rheumatic disease towards biobanking and data-linkage. This is of importance for us as we, like a growing number of countries globally, develop a national biobank for rheumatic conditions in Australia. Our aim is to explore participants’ knowledge, attitudes, perspectives and beliefs regarding the process of biobanking and data-linkage to national health statistics in the context of their illness.

Methods 

This qualitative study was conducted between October 2019 and April 2020. Adult patients with rheumatic disease were recruited from a tertiary hospital in Sydney, Australia to participate in focus groups or semi-structured interviews. The collection and analysis of data was an iterative process using grounded theory underpinned by the health belief model.

Results

There were fifteen participants, nine of fifteen were women, the mean age was 55.7 years, majority (73%) of patients had rheumatoid arthritis, the average disease duration was 15.1years. Four main themes arose including knowledge of biobanking and data-linkage, perceived barriers, perceived benefits and attitudes towards biobanking. Perceived barriers included fear regarding privacy and data-governance, fear of discomfort and cost. Perceived benefits included personal benefits and helping society.

Conclusion

This is the first study in Australia exploring the perceptions towards biobanking and data-linkage for rheumatic diseases. Knowledge of biobanking varied significantly. Although, there were perceived risks to participation, participants in this study had positive attitudes towards participation due to altruistic motivations.