This project is seeking to increase the knowledge of consumers about the benefits and risks of pathology to support more informed engagement of consumers in the pathology testing process. The steering committee included representatives from:
Royal Australian College of General Practitioners (RACGP)
Royal College of Pathologists of Austrasia (RCPA) (pathologist and Lay Committee representatives)
Department of Health and Ageing (DoHA).
Grant Recipient
RCPA
Aims and Objectives
to produce a consumer-focused Australian publication based on the concept of the UK publication Sense About Science – Making Sense of Testing (http://www.senseaboutscience.org/data/files/resources/6/Making-Sense-of-Testing.pdf)
to educate the public about pathology testing in an easy-to-read format based on sound scientific principles and focusing on a set of key identified risks and benefits.
This project is current and these aims and objectives are in the process of being achieved.
Outcomes
Nine fact sheets are currently in the final stages of production. These are:
Who works in pathology and what do they do?
Why do I need a pathology test?
Consent – What you need to know
Where can I have a pathology test?
How safe is the testing process?
What should I know about pathology test results?
How are pathology test fees calculated?
What should I know about genetic testing?
What should I know about Direct-to-Consumer genetic testing?
Lab Tests OnlineAU Stage 1 (Current)
Description
This project is seeking to develop an authoritative website that provides information on pathology tests available in Australia, and draws on international collaboration of pathology experts. The Lab Tests OnlineAU (LTOAU) website is: http://labtestsonline.org.au/.
Grant Recipient
Australasian Association of Clinical Biochemists (AACB)
Aims and Objectives
to develop an authoritative database which is accessible as a website to the general public and health professionals
to determine the needs of the current users and non-site users to improve the website content and accessibility
to explore ways of promoting the website more widely to health consumers and health professionals.
These aims and objectives were achieved by this Stage 1 of this project.
Outcomes
A two-part research project was implemented between June and November 2011 to determine the needs of current users and non-site users and determine attitudes towards pathology in general, and more specifically to the LTOAU website. The findings from this survey will be used to develop some of the tasks in a proposed Stage 2 of this project.
Apart from news items, very little additional material has been added recently as the bulk of the editorial workload continues to be added at the three yearly site review. This process is nearing completion for all tests and conditions.
The project is currently in a publish hold phase to exhaustively check the website before re-launching the site with the new content management system.
The initiative of using trainee pathology registrars is working well and a recently retired pathologist has been recruited to strengthen the team.
The project now has a sustainable solution in place for the delivery of editorial content across all of the pathology disciplines.
There has been an average monthly traffic growth of 4% resulting in a 42% increase over the previous year.
Findings
Responses to Consumer Research Survey
The research confirmed that in the four years since its launch, LTOau has been a valuable asset in empowering people by giving them the reliable and trustworthy pathology information they need to engage in productive relationships with medical and health professionals. It is also an important information source for doctors, nurses, practice managers, pathology collectors and health professionals, both for themselves and their patients.
The research also highlighted fundamental changes taking place within pathology. Access to test results is becoming a realistic expectation among the public and the medical profession, and this is seen by even the most conservative and change-resistant as a positive development.
The medical professionals and members of the public who took part in the research were strongly concerned about the veracity of information on commercial websites, with the public particularly wary of any information from overseas.
The trend towards self-education and more active patient participation in healthcare is being embraced by some sections of the general and medical communities and resisted by others.
The research flagged a clear need for a non-commercial, trustworthy source of public information about pathology. LTOAU has established itself as the first point of call for pathology information.
The research also highlighted that general practitioners (GPs) were mostly against patients being informed about health matters generally.
The research noted that pathology collection staff would like to see the public better informed about pathology, the testing process and in particular the cost and value of testing. They believe that if people understood the cost of pathology testing then they would value it more.
One group of Sydney-based hospital doctors and nurses also thought there was an issue of doctors not being fully informed about tests and who felt the need to ‘over-test’ their patients.
Pathology collection staff reported most questions from the general public related to whether they would be bulk-billed for the test, how long it takes to get results and where the results were sent.
Many GPs in the survey felt LTOAU was more suitable for them and was rated as the most concise source of information on pathology testing readily available to GPs.
GPs also found it difficult to accept the site would have been written without some form of commercial or government agenda.
Most people found LTOAU by Google which highlighted the need for a consistent, ongoing communication campaign to promote it as a reliable information source for pathology.
Recommendations
LTOAU needs to have clearer references to its authors and sponsors and clearly articulate that the website is Australian, independent and non-commercial with the information prepared by experts working in pathology testing.
Endorsements will be negotiated with relevant government agencies and recognisable medical and professional associations.
The AACB should state their credentials clearly to reassure the audience the information has been prepared under the auspices of a body with the appropriate authority and expertise. This may include a link on the banner to a section about the AACB.
Appoint a web professional (this is in progress) to redesign and explore ways of presenting the information so it is easily accessible. New copy will also be prepared.
The website’s content will be reviewed by the Site Manager and tested via an online survey of 40 participants including members of the public and medical and health professionals.
All information will be reviewed and revised and made more readily accessible.
Develop more information resources on the website.
Implement a consistent, ongoing communication campaign to inform consumers and health care workers about the existence of LTOAU, highlighting it as an independent, trustworthy source of information.
