Back in 1968, 8,583 Tasmanian school children were recruited into what is now the world’s largest and longest running study of asthma and respiratory health – The Tasmanian Longitudinal Health Study (TAHS). One participant has a vivid recollection of – “standing in line at Punchbowl Primary School in my bloomers and singlet blowing into a tube which looked like a hairdryer.”
The study has followed these participants from the age of 7, via health questionnaires and lung function tests, for 55 years. So far, the data collected has informed over 80 research articles and 140 conference presentations, influencing new scientific knowledge, clinical practice and Australian policy around respiratory health. The study has just begun its latest follow-up, which is critical for investigating the impact of previous health and environmental factors on the later life respiratory health of their participants, now aged around 60 years old.
Keeping track of more than 8,000 children as they grow up, have families of their own, and age is no easy task. Many participants have moved interstate or overseas. In previous decades, the study team utilised individual matching with Electoral rolls, Marriage registries, and Medicare databases to find participants at each follow-up stage of the study. At one time, Aurora Energy even printed a message from the TAHS on their power bills, encouraging participants in Tasmania to get in touch.
Nowadays, things are significantly more challenging. Privacy laws, important for protecting individual safety and liberties, prevent the study team from utilising Medicare or any other Commonwealth databases to find their original participants.
With the rise in email and phone scams, people are understandably less willing to engage when we reach out to them.
“We respect our participants’ privacy and confidentiality, and we understand why people must be cautious when they are contacted. We always work within the bounds of research ethics and try to balance our respect for privacy with the need to trace our participants for this important health research.”- Professor Shyamali Dharmage, TAHS Principal Investigator.
To reach as many participants as possible for the latest follow-up, the study team is exploring modern strategies for tracking down their participants, including Social Media tiles on local community Facebook pages and stories in local newspapers.
“We are really counting on local Tasmanian media in all its’ forms to spread the word and help find our participants so the study can maintain its standard as world-class research into respiratory health”. – Prof Dharmage.