Transforming Lab Tests OnlineAU

Australia’s public portal to pathology

A project funded under the Australian Government’s Quality Use of Pathology Program

Building the confidence patients needEquipping health professionals to make the decisions that matter

Showcasing the valuable work of the lab

Final Report – January 2017

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© Australasian Association of Clinical Biochemists Inc. 2016

Lab Tests OnlineAustralia’s public portal to pathology

Australasian Association of Clinical Biochemists

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Acronym List

AACB - Australasian Association of Clinical Biochemists

GP- General Practitioner

HGSA - Human Genetics Society of Australasia

ISO - International Organization for Standardization (ISO)

NATA - The National Association of Testing Authorities

NPS - National Prescribing Service

PAA - Pathology Awareness Australia

RCPA – The Royal College of Pathologists of Australasia QUPP - Quality Use of Pathology Program

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Executive Summary

Lab Tests OnlineAU is a website designed to provide information about pathology testing to members of the general public in a way that is accurate, authoritative and independent of commercial or political influences. Information on Lab Tests OnlineAU is written by practicing pathologists and scientists including some of Australia’s leading experts in the field of diagnostic pathology.

Lab Tests OnlineAU is licensed to and managed by the Australasian Association of Clinical Biochemists (AACB), one of pathology’s peak bodies representing many of the professionals who work in laboratories and is supported by the Royal College of Pathologists of Australasia (RCPA).

The site is accredited by and complies with the international standards of the Health On the Net (HON) foundation. It is part of an international network of similar websites. There are now 17 Lab Tests Online websites world-wide in 14 languages sharing scientific information and test news.

This document describes the achievements of Lab Tests OnlineAU under the 2015-2016 Quality Use of Pathology Program (QUPP) funding period. Key developments achieved over this timeframe included the development of a new and comprehensive section on “Explaining your pathology report”, a new Genetics Module featuring mixed media components and expanding our reach.

These modifications and additions have had a significant impact to the reach of Lab Tests OnlineAu. Over the duration of the QUPP funding period the website has seen a doubling of visitors, with now over 80,000 unique visitors accessing the website on a monthly basis (Figure 1).

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Figure 1: Monthly session (unique visitors to the website) per month. June 2015 to October 2016.

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Foreword from Dr Louise Wienholt

Chair, Lab Tests OnlineAU

The digitisation of healthcare is increasing at a dramatic rate. There is a strategic push by all facets of healthcare to introduce a broad range of technologies and applications that will enable more efficient automation, better decision making, stronger connectivity, and more advanced data-driven innovations in health.

As part of this, there is also a demand for personal healthcare information to be available securely online, in a format that facilitates a greater understanding of personal healthcare decisions. Lab Tests OnlineAU plays an important role in helping patients understand how to read and interpret their results and provides educational material on disease-specific medical testing.

Millions of consumers source healthcare information on the internet. The quality and accuracy of this information is variable and it is often difficult for those accessing it to judge how reputable and accurate the data is.

Lab Tests OnlineAU fills an important gap in healthcare literature on the internet by providing quality, evidence-based information on pathology tests specifically written for an Australasian audience. Material on the website is written by scientists and pathologists, working in the industry and it is updated frequently.

This past year has seen a number of important and exciting changes to the website that have enhanced its utility to consumers. Foremost has been the development of the “Genetics Media Library.” In association with scientific and medical professionals and the support of the Human Genetics Society of Australasia (HGSA), Lab Tests OnlineAU has released a number of resources including videos that are designed to give consumers an understanding of some of the basics of genetics including genetic testing found in the LTOAU Media Library .

In response to consumer feedback on the website a redevelopment of the “understanding your report” page was also undertaken. This page now provides detailed information on reading pathology reports to consumers, allowing them to better comprehend their pathology reports and giving them greater power to make informed healthcare decisions. Consumer feedback on Lab Tests OnlineAU

has shown that the majority of users feel more empowered to make decisions about their healthcare after visiting the site, highlighting the importance of these developments.

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About Lab Tests OnlineAU

Lab Tests OnlineAU is Australasia’s consumer portal to pathology testing, delivering independent and authoritative information prepared by practicing pathologists and medical scientists.

Established in 2007, there is no other Australasian website where consumers can source reliable easily disseminated information.

Around 1.7 million people (unique visitors) have turned to the website over the past three years, clicking onto more than 4.9 million pages to find out about the pathology tests they or someone close to them is having and the implications for their health.

As well as members of the public, Lab Tests Online AU is widely used by nurses, general practitioners (GPs), practice managers, tertiary students and allied health professionals searching for easily-disseminated scientific information about pathology testing they can trust.

At present, the site is accessed by up to 730,000 people annually. Research has identified that in the past year up to 50,000 people a month are new visitors to the website.

The Lab Tests OnlineAU app, launched in November 2012 has seen 13,700 downloads, reflecting the many regular users of the service.

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Our role in healthcareThe on-demand world of the smart phone and the tablet has created an environment in which people expect to have access to health information at anytime and anywhere – just as they do with on-line shopping, network TV and social media. The internet has become the first place people go to find out about health matters. Australia ranks third in the English speaking world after the US and the UK when it comes to the volume of health-related searches.

The benefits of the empowered, educated and informed health consumer are well documented. While the vast majority of people feel they have an increased sense of control over their healthcare, they also have concerns about the volume of confusing and contradictory information circulating in the community and being shared on the internet. The responsibility lies with health and medical institutions to respond to the demands of the modern, connected patient by providing reliable authoritative information that is readily understood and delivered in ways that can be easily accessed.

The mission of Lab Tests OnlineAU is to deliver the information people need – instantly and on demand – to help them take an active role in their healthcare. By explaining all aspects of testing – why a test is ordered, what it can detect and what the results can show– our aim is to equip consumers with the information they need to have productive conversations with those involved in their care and treatment. This has particular benefits for people who depend on regular testing for chronic illnesses, long-term medication/treatment and those with serious illnesses such as cancer. Lab Tests OnlineAU also provides the medical and health community with accurate, well- written and trustworthy information they can use as a ready reference for themselves or to pass on to their patients.

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Achievements against the strategic objectives of the 2015– 2016 funding period

1.Develop a new and comprehensive “Explaining your

pathology report” module

Pathology results from different pathology providers, as well the electronic versions transmitted by the laboratory and subsequently printed by the requesting general practitioner (GP) vary greatly. Formatting, the order that results appear, units of measure, reference ranges and the way that abnormal results are highlighted all differ.

As part of the initial work on this activity, pathology reports from a number of different providers were reviewed as well as consensus guidelines and requirements from organisations such as the International Organization for Standardization (ISO), The National Association of Testing Authorities (NATA) and The Royal College of Pathologists of Australasia (RCPA). From this review Lab Tests OnlineAU was able to determine commonalities in pathology reporting and develop a “standardised” report that shows consumers what they should typically see as part of their pathology report.

The development of this section allowed for the design of interactive features whereby users can prompt the display of additional information by hovering over a word or phrase with the mouse, or by touching the link on a mobile device.

As well as the design changes, this section was also further enhanced with the addition of the specific example of a report on reading HbA1c results. It was identified that a large number of visitors to the site are seeking information on HbA1c testing and hence this new feature will aid consumers to better understand their pathology report in this area.

To view the new landing page for these enhanced features visit:

Reading your results

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2.Development of a new Genetics Module

The interest in and availability of genetic testing has dramatically increased in recent years. A review of content and direct feedback by consumers identified this topic as a key area for development on the Lab Tests OnlineAU website.

A review of the content and the development of new content was done in collaboration with the Human Genetics Society of Australasia (HGSA). Members of the HGSA in association with the Lab Tests OnlineAU volunteer editors - who are specialist genetic pathologists and scientists - performed an extensive review of the existing content on the site and provided a list of recommendations for new content.

These recommendations were implemented in September 2016 and resulted in the following new content:

III. Fragile X syndrome

IV. FMR1 mutation

V. Non-invasive prenatal testing (NIPT)

VI. MTHFR mutation

VII. ALK Mutation

VIII. BCR-ABL1

IX. EGFR Mutation Testing

X. Genome-wide Microarray testing

XI. HFE Mutations

XII. JAC2 mutationA second key component of this activity was how to provide explanatory information about genetics in general. This is a complex area even to people with a science education so the challenge of making genetics understandable to the general population was considerable.

Initial work centered on modifying an existing material on the website about basic genetics using lay writers and consumers representatives. As part of this process, consumers identified that the material was difficult to “digest” in its current format and highlighted that alternative viewing options may make this information easier to understand. To address this issue utilization of a graphic approach in conjunction with animation was developed. The production has taken a considerable period of time with a number of people involved in the review process, and incorporation of their comments into new versions. The end result is two short animated videos entitled:

• Genes and how they work

• Targeted therapies and cell signallingFurther information on the development of this content is discussed in the following section.

Lab Tests OnlineAU would like to acknowledge and thank Dr Kevin Carpenter of the Human Genetics Society of Australasia and Dr Bruce Campbell, Chief Editor Lab Tests OnlineAU for their significant contribution to the redevelopment of this section which has resulted in highly positive feedback from both consumers and our stakeholder organisations (see section 4 for a full description of these organisations).

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3.Extend the reach of Lab Tests OnlineAU by providing

alternate viewing options for consumers

ii. Develop and implement an application (app) that renders

from the new websiteDevelopment of the new Lab Tests OnlineAU app was completed over this funding agreement and was launched on 20th September 2016. The new app mirrors the content and design of the main website, ensuring consumers have a better user experience compared to the old version. The new app also means that consumers can view content without being connected to the internet, which is especially helpful in rural settings

While the new app was being developed, some time was spent considering the relevant target audience for it with the view to optimising the use of Lab Tests OnlineAU. As part of this process, medical students were identified as a potential key audience. Some preliminary contact has been made with the Australian Medical Students Association, however, a further strategy for engagement, including awareness campaign will be required.

iii. Commission up to four videos to increase ability to reach

a broader demographic of varying ages and education

levelsMaintaining both the currency and the appeal of the Lab Tests OnlineAU website was a key challenge for the project team. Adding new content is clearly important, however it was also identified that alternative to plain text such as videos and animations should be an important design consideration. This additional media content is facilitated by increasing internet bandwidth and the ease with which this medium can be provided.

The Project Steering Committee investigated a number of topics to identify where there were deficiencies in consumer information on testing. By analysing topics that consumers search for on the Lab Tests OnlineAU, website allergy testing and HbA1C in the diagnosis of diabetes were identified as priority areas.

In consultation with the Australasian Society of Clinical Immunology and Allergy (ASCIA) and paediatric immunologists at the Royal Children‘s Hospital in Melbourne, we developed a script. However production and development took a considerable period of time such that the video will have to be completed in a future project. Similarly a script for the role of HbA1C in the diagnosis of diabetes was also completed for future video production. We were unable to proceed further with the production of these two videos due to time and funding constraints, but envisage that they may be part of a new funding proposal.

In parallel to the above processes Lab Tests OnlineAU undertook the production of video medium and animation to help us to explain our genetics content. This resulted in the production of two video pieces that were described in the previous section.

iv. Expand social media (Facebook and Twitter) capability 10

to further extend audienceTwitter and Facebook are used by Lab Tests OnlineAU to promote new and updated content to the website. This media is also used to promote the newsletters of our supporters including the Royal College of Pathologists of Australasia (RCPA), Know Pathology Know Healthcare and Friends of Science in Medicine. Relevant news and journal articles are also distributed. The number of users have increased over the agreement period from 1,003 to 2,834 on Facebook and from 328 to 463 on Twitter.

v. Engage a Search Engine Optimiser (SEO) to make

recommendations on improving search engine statistics

and internet profile‘ntegrity’ a Melbourne based company was selected to perform a Search Engine Optimiser (SEO) review of the Lab Tests OnlineAU website. Their review provided a list of 44 initiatives to improve traffic to the site. Progressively all of these recommendations were implemented, which resulted in a doubling of traffic to the website (see Figure 1, page 4). As part of this, a refresh of the homepage was launched in 2016 to better accommodate the improved News and Video sections and the Health on the Net Foundation (HON) has been renewed. Recommendations concerning privacy, our objective and commercial advertising have also been implemented.

An important part of the SEO strategy has been the use of Google Grant AdWords. This initiative, available to not-for-profit organisations such as Lab Tests OnlineAU allowed for $10,000 per month in complimentary Google Ads. As the number of site visitors increased over this period the AdWords Pro grant was also extended to the equivalent of $40K per month.

In addition to the SEO initiatives that were implemented an ongoing issue continues to be the leakage of Australian traffic to the US site. This has been the subject of several discussions with our colleagues at Lab Tests Online USA. It was resolved by Lab Tests OnlineAU to finance a pop-up on the US site that will remind visitors from Australia that they may wish to be directed back to Lab Tests OnlineAU.

We see this SEO activity as one of the most successful parts of the project in that we believe it has been a major contributor to the increased numbers of visitors coming to the site. That success has come in part through us selecting ‘ntegrity’ whose service and response remains excellent.

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4.Develop a communication strategy for promotion of

the redeveloped Lab Tests OnlineAU

The project communication strategy was developed with key stakeholders (as outlined on page 15). As part of this strategy, discussions were held with relevant representatives from these organisations as well as the Department of Health in relation to linking new content on the site and avoiding duplication.

We are also now featured on medical health records as a source of information for consumers on pathology tests, and have significant cross coverage on our Stakeholder websites.

Lab Tests OnlineAU have also had very preliminary discussions with relevant areas within the Department of Health, such as Health Care Homes that support those with chronic diseases, and the engagement with Lab Tests OnlineAU may provide consumers with a useful resource about pathology tests. Further engagement with the relevant contacts in the Department of Health is on the agenda as part of this strategy.

The new content of the website and the app was launched at the Australasian Association of Clinical Biochemists (AACB) annual conference in September 2016 to over 500 attendees.

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5.Undertake an evaluation of activities under this

objective to assess if they have attributed to the

improvement of Lab Tests OnlineAU

Qualitative and quantitative research was conducted into the Lab Tests OnlineAU website and the service it provides. The goals were:

To record visitor demographics and compare these with the findings of earlier surveys in 2013 and 2011 to identify changes

To obtain users’ views on the service and assess whether it meets their requirements

To seek opinions on content and information delivery and gather suggestions for improvements

This research was conducted through:

An online pop up survey on the website (n=515 commenced the survey, n=323 completed the survey).

Two focus groups, comprising:

health professionals, and

members of the public with chronic or serious illnesses requiring regular pathology testing.

Key findings The 2016 online survey showed that the user profile had remained consistent with figures obtained in the 2011 and 2013 surveys, with 66 per cent of users being members of the public, 30 per cent health professionals, and four per cent full-time students. Twenty-three per cent of the total sample were studying healthcare in some way, including those already working in the sector.

In 2016 there were relatively more males and older Australians accessing the site compared with earlier years.

The largest professional cohorts were nurses, pathology staff, allied health personnel and doctors. The large majority of respondents in the general public group who were seeking information for their own needs rather than someone they were caring for.

Most people (78%) accessed the website from a PC or laptop. The remainder used a tablet or phone (preferring to access the website rather than the app). Fourteen per cent of health professionals and four per cent of the general public surveyed had downloaded the app.

i. General public responsesThe issue of trustworthiness of health information has been a constant theme in all focus groups undertaken to date. Members of the public in particular have repeatedly stressed the importance of having independent information that is not skewed by commercial considerations. They prefer government supported websites because they believe these are trustworthy and they actively look for .gov.au web addresses. Levels of trust for the website have been consistently high throughout the focus groups undertaken over the years and this remains the case. It was suggested the website should be more clearly ‘badged’ as being supported by government. Participants in the public focus group had not heard of the Royal College of Pathologists of Australasia or the Australasian Association of Clinical Biochemists and felt endorsement by these organisations would not be of any value.

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The online survey asks respondents to rate their experiences as a result of the information they obtain from the website. In 2016, levels of satisfaction had risen with 65 percent of the general public saying they understood their diagnosis and/or test better; 62 per cent feeling more confident talking to their doctor; and 40 per cent believing the information they obtained would reduce the time they had to spend with their doctor. They also felt they understood more about lab testing in general and its importance as part of the diagnosis process.

ii. Professional responsesThe online survey asks health professionals to rate Lab Tests OnlineAU in terms of its usefulness and reliability, both for themselves and their patients. In 2016, 90 per cent found the site a useful source of information (vs. 68 per cent in 2013) and 82 per cent saved time rather than searching elsewhere (vs. 53 per cent in 2013). Professionals also felt better prepared (77 per cent) and more up-to-date (77 per cent).

iii. Suggestions for additions and improvementsHealth professionals were generally supportive of patients receiving their test results with the caveat that results were interpreted by a medical professional. Some recognised the need to improve their skills in communicating with patients as part of this process. They believed this would lead to a better informed and more health literate population.

They welcomed the addition of graphics explaining results reports to the website and they liked the suggestion of future video clips. Suggestions for new content included: HbA1c, the imminent changes to cervical screening program (HPV testing rather than the Pap screen); renal tests, troponin; and pregnancy screening. They said they would like information that would support their advice to patients on the limits of testing. Patients optimistically overestimated the capacity of laboratory testing. For example, many believed it was possible to perform a blood test that would tell them if they had cancer.

The general public were in agreement with health professionals that they need medical interpretation of test results. Those with chronic conditions could see value in being able to track their results via the My Health Record.

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6.Explore options for future sustainability of Lab Tests OnlineAU

The projects described in this document would not have been possible without the sole funding provided by the Commonwealth Department of Health. In order to ensure the sustainability of Lab Tests OnlineAU, a strategic project plan that includes partnerships with several stakeholder organisations has been developed. These include the National Prescribing Service (NPS), the Australasian Association of Clinical Biochemists (AACB) and Pathology Awareness Australia (PAA) who present a mutually beneficial collaboration on consumer education and expansion of contacts for the Lab Tests OnlineAU.

We also continue to work closely with The Royal College of Pathologists of Australasia (RCPA).

At the commencement of this project some changes were made to the way that we operate to ensure the future sustainability of the website and also ensure the satisfactory oversight of project funding throughout this project. Key personnel involved are:

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Project Steering CommitteeDr Louise Wienholt (Chair)

Dr Andrew St John (Project Manager)

Mr Peter Graham (Chief Executive Officer AACB)

Ms Suzanne Petrie (Department of Health Representative)

Project Working GroupDr Bruce Campbell (Chief Editor)

Dr Andrew St John

Mr Tony Prior

Ms Pamela Robson (Medical Writer)

Project Advisory CommitteeRCPA – Dr Debra Graves

NPS – Dr Robyn Lindner

AACB – Ms Helen Martin

Consumer Representatives – Mr Tim Benson, Ms Jacqui Gibson

PAA – Mr John Crothers

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A key task is maintaining a 3 year review of all existing content. During the course of this project we have also made some changes to the editorial process as illustrated below.

All new and existing content is being reviewed by a lay writer prior to final review by our Chief Medical Reviewer; this is resulting in a major rewriting of some material in order to make it more understandable for the lay person.

Comparing content of the American and United Kingdom Lab Tests Online sites to the Australian site is an ongoing activity and when new material appears on our “sister” sites we will review its relevance for Australia.

Lab Tests OnlineAU EditorsThe editorial group is responsible for editorial content on the site. All pages are reviewed by a member of the team, each of whom works with other professional colleagues and various information sources to verify that the information is accurate and current. New pages are prepared by invitation from expert authors and subject to verification and editorial scrutiny by a member of the team. Ten new Scientists and Pathologists have been recruited to review material on an ongoing basis.

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Lab Tests OnlineAU has seen significant increases in the number of people visiting the site, however there is still capacity to increase our reach. Future strategies for development are as follows:

Content - Expand and enhance existing content to provide trustworthy and understandable information for the lay consumer.

Market - Increase traffic to the site by 25% per year.

Relationships and funding – maintain existing and develop new relationships with organisations that may provide funding or drive traffic to the LTO site.

Accordingly there are a number of specific projects we would like to undertake in the future.

1.Genetics

As genetics continues to grow in importance we need to ensure the site provides explanation of these changes through addition of new genetic tests as they are included in the MBS and extending the content to include biochemical genetic testing for inborn errors of metabolism.

2.Test and Results Explanation

User feedback has consistently proven that visitors to the site want to know more about their reports, especially relating to reference intervals. Lab Tests OnlineAU is committed to increasing the number of result specific explanations of laboratory reports as developed in this project to individual tests starting with those with harmonised reference intervals.

3.Improve the readability and understanding by lay

consumers of existing content

Feedback from consumers has identified that some of the Lab Tests OnlineAU content is not easily understood and “overly complicated”. To address that issue it will be imperative to further broaden communication with a variety of media including videos, through the rewriting of key tests (as identified by focus groups) by a lay medical writer to improve understanding of scientific content and via the addition of new drawings and other graphical material to the website.

4.Targeting specific healthcare groups such as those

with chronic disease

A significant number of patients who get pathology tests, and who are consumers of the Lab Tests OnlineAU website are those with a chronic health disease. In collaboration with a recent Federal Government initiative for chronic disease patients called the Healthcare Home, Lab Tests OnlineAU would like to explore the development of a specific app for chronic disease patients that utilises existing site content but presents it to such patients in a more accessible way.

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5.Promoting Lab Tests OnlineAU to medical students

Feedback suggests that medical students are a significant portion of those people who have downloaded the old app. The launch of the new app gives Lab Tests OnlineAU an opportunity to increase the number of medical students using this resource through various promotion strategies.

6.Partnerships with other healthcare organisations

Some of the projects listed above involve collaboration with other healthcare groups and professional organisations. Lab Tests OnlineAU would like to extend that collaboration to groups such as those involved with the development of My Health Record and General Practitioner software providers.

Major new content has been added over the last 15 months and in addition we have developed new strategies to reach a wider audience. Both of these major initiatives have contributed to a doubling of site visitors. Feedback from consumers remains very positive and the site remains a highly regarded and trusted source of information.

Lab Tests OnlineAU would like to formally thank the Australian Government’s Quality Use of Pathology Program for supporting this project.

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Screen shots of new test explanation page and genetics video material

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