Orthopaedic science in the community - Three lessons from presenting at the Sydney Science Festival
Last month I was invited to give a talk on orthopaedics, data and science research at the local Ku-ring-gai Library in Gordon as part of National Science Week and the Sydney Science Festival. As is always the case with science encounters, I walked away with more insights than anticipated on my way in.
What is National Science Week and the Sydney Science Festival?
National Science Week runs annually in August and features more than 1000 events around Australia, attracting an audience ranging from children to seasoned science professionals. It aims to provide a platform for Australian scientists to showcase their contributions and work, foster partnerships between the community, researchers and industry, and to encourage young minds and the general public to pursue an interest in science and science careers. The Sydney Science Festival is Sydney's local effort to consolidate and promote the events of National Science Week with a combination of talks, workshops, exhibitions and other events. Not all science is colourful and thrilling, but it is critical that we establish an understanding between ourselves as scientists and the communities we serve.
What did I learn from presenting at the Sydney Science Festival?
The key purpose of my talk was to dispel some of mystery behind patient data collection and what organisations like ours do with the data, covering everything from the accessing, handling, processing and the dissemination of it.
Lesson 1 - There is a spectrum of attitudes to sharing data for research purposes
A key consideration for us to do our best work supporting clinicians and organisations to implement evidence-based practices is the perception and attitudes of not just patients, but also the general public, to what we do. Without the recognition of the importance of the work we do with their data and acceptance of the process for retrieval and analysis, there will be significant barriers to answering important clinical questions. With a show of hands in the audience, I think we established a few attitudes to data sharing:
Attitude 1: Robustly positive - Will provide consent regardless of the situation and nature of the data being shared. Enthusiastic for the positive gains offered by research and data analysis.
Attitude 2: Initially negative, but objectively flexible - Default position is no, but could be convinced to share given the right circumstances and conditions. This group is likely most aware of and sensitive to the subtleties of different data types, which also fall on a spectrum of sensitivity to the individual. For example, how much a person's elbow bent two years ago might be fairly innocuous for most people (safe end of spectrum), while a documented instance of mental illness in the last three months might not be (dangerous end of spectrum).
Attitude 3: Robustly negative - Will deny consent/participation regardless of the situation and nature of the data being shared. Highly sensitive to the risks associated with data loss/leakage/theft associated with their own data, which is not outweighed by the potential benefits. I think this is most applicable to individuals with perceived negative aspects of their medical record, who would also benefit the most from research outcomes in some circumstances.
Lesson 2 - Individuals (patients) are largely dis-empowered in this process
What became clear to me the more I was able to interact with the audience, was that the decision-making power of patients with regards to their data once they have committed to a choice of provider (public, private, operative, nonoperative) is extremely limited and many of the issues that we face with respect to patient's privacy are not directly influenced by the patient themselves at all. This reinforces the important role we have as researchers in safeguarding patient privacy and acting in their best interests throughout the process.
Lesson 3 - There is some distance to cover in making research/analytics accessible to the people that matter
I had an insightful experience from my first community-based presentation on the great work we do at EBM Analytics with our clinical partners. I was able to put some tangible feedback to work in the context of my hypotheses, however, there is some substantial distance to cover before the process of organising, analysing and reporting on research performed in the clinic environment is fully understood and appreciated within society broadly. While it's always difficult to gauge whether your audience is absorbing all of what is presented, this much was clear to me - the community has a genuine interest in the kind of work that we do, and had valid reasons for concern around the ambiguity of where their data is stored, who has access and how it's used.
As scientists, especially those in the medical and clinical research fields, we need to actively bridge the gap between what we do and what the community thinks we do. Their understanding of our work is fundamental to the quality of our output. A relationship of trust and transparency will increase awareness, facilitate engagement, and ultimately work to improve our efforts in improving quality of life.
Acknowledgements and a thank you to:
Shoba Abraham and Gordon Library
Jessica Boh and Manaal Fatima (EBM Analytics)
Jackie Randles and Inspiring Australia
National Science Week
Sydney Science Festival