Report to the Department of Health and Ageing, Quality Use of Pathology Committee on The

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REPORT TO THE DEPARTMENT OF HEALTH AND AGEING, QUALITY USE OF PATHOLOGY COMMITTEE ON THE COMPLETION OF THE FIRST FUNDING AGREEMENT

Summary

Since its launch in August 2007, labtestsonline.org.au has become the first point of call for the growing number of people seeking information on the internet about pathology testing. In just four years,traffic has built from an average monthly rate of 15,000 in the first six months, to an impressive 75,000 visits a month, in the past six months.

The websiteis proving to be a valuable asset at a time when access to pathology information is becoming even more critical in equipping people to play a more active part in managing their health care, an issue of special importance for the growing number of those suffering major chronic illnesses.

Since the outset, there has been a commitment to the ongoingdevelopment ofthe website to keep pace with the needs of users, changesin pathology, and more broadly, shifts in the delivery of healthcare. In 2011, it was time to review the website to explore the needs of users and look at ways in which improvementscould be made. This involvedcompiling detailed demographic profiles of users and looking at how and why they are using the website. It was important to be able to place this in the broader context and so we investigated the way health information is being used by the publicand how it impacts on their healthcare experiences. We also exploredthe levels of public knowledge and understanding of diagnostic pathology testing and how this affects the way they use services. Given the website is used by both the public and medical professionwe surveyed both sides of the healthcare equation.

We learned that labtestsonline.org.au is highly effective in empowering people by giving them the reliable and trustworthy pathology information they need to engage in productive relationships with the people looking after them. It is also a valued information source for doctors, nurses, practice managers, pathology collectors and other health professionals, seeking assistance for themselves and their patients.

In the wider context, the research highlighted that the whole business of health information is in a state of flux. The sudden explosion of online health information, together with changing community attitudes encouraging greater personal participation in healthcare, are throwing up challenges for patients and medical professionals alike and impacting on patient -doctor relationships.

Given that internet information sources are global and their authors are sometimes not readily apparent, there is real public and professional concern about the veracity of online information and a desire for reputable, non-commercial, Australian sources.

The research also confirmed an important issue –a lack of public awareness and understanding of diagnostic pathology meansthat little value is placed on its role in the healthcare continuum. This is a problem for all those involved in the delivery and funding of services, as well as laboratory professionals whose work often goes unrecognised as a result.

The future role of labtestsonline.org.au

Clearly, labtestsonline.org.au has a key role to play in the future by delivering accurate, trustworthy information that gives people the necessary confidence and skills to help manage their health. It also needs to be part of the solution in addressing the lack of public awareness of pathology and the value of its place in their healthcare.

Importantly, labtestsonline.org.aumust stay abreast of technological and communications trends. When the website was launched only four years ago, Facebook and YouTube were still in their infancy and even as recently as last year only arelatively few people were downloading apps onto their smart phones. Now, our hospital doctors tell us they want to be able to access labtestsonline.org.au on their phones while they walk the wards. This has implications for the way we develop the website and the way we communicate with our users and the public in the future.

This document outlines the key research findings and sets out the activities that will be undertaken in response to the research.

The development of labtestsonline.org.au

labtestsonline.org.au was initially developed by the Australasian Association of Clinical Biochemists (AACB),in partnership with the American Association for Clinical Chemistry (AACC) and the Association for Clinical Biochemistry (ACB, UK), to address a paucity on the internet of trustworthy, impartial pathology information suitable for a public audience. The AACC had launched the initial site in 2001, followed by the ACB in 2003, with the latter site providing the platform for the future Australian version.The AACB started investigating the viability of a local site in 2004 with AACB Council subsequently approving funding to proceed. This was followed by discussions with the Department of Health and Ageing, to firstly make them aware of the resource and to explore funding mechanisms.We had also commenced negotiations with the AACC to access a copy of the LTO UK site and this was agreed to in mid 2006. In August 2006 a submission was made to the Quality Use of Pathology Committee for funding to build and populate the new website. A copy of the UK site was made available to us in September 2006 and a small team from Sullivan Nicolaides Pathology, headed by Dr Bruce Campbell, started editorial work in October. During this time, a Management Board was formed, consisting of Dr Andrew St John (Chair), Tony Prior (AACB CEO), Dr Tamsin Waterhouse (RCPA), Dr Bruce Campbell (Chief Editor), Dr Janney Wale (consumer representative), Dr Bob Walsh (DOHA) and Dr Darryl Nicol (public pathology), meeting for the first time in December 2006. In February 2007 the AACB entered into a formal licence agreement with the AACC, who hold copyright on the LTO brand and content and the first QUPP DOHA Funding Agreement was signed in July 2007.

On August 10th 2007 the site was officially launched at the laboratories (PaLMS) of Royal North Shore Hospital by the then Minister of Health and Ageing, The Hon Tony Abbott MHR, ensuring good media coverage.

As the editorial work continued, Dr Bruce Campbell, with the support of the Royal College of Pathologists of Australasia (RCPA), gathered together volunteer writers - pathologists and scientists, representing a broad range of disciplines. Bruce still heads up the Editorial Group and has, with the support of Dr Debra Graves (RCPA CEO), been successful in incorporating the LTO editorial process into the RCPA pathologist training program. The editorial group are acknowledged for their dedicated work on the LabTests Online website.

The original UK material formed the basis on which Australian information relevant to the local population was developed. Since then, a considerable body of new work has been added drawing upon material developed by the AACC, ACB and locally. At launch, the site had 159 tests and 77 conditions, compared with 223 tests and 102 conditions at the end of 2011. All information is subject to a three-yearly review (just completed) as part of the licence agreement with the AACC, the QUPP Funding Agreement and our Health on the Net Foundation (HON code) accreditation, see Health On the Net website.

LTO Australasia website activity over past three years (a session involves multiple page views)

The table below shows our website content and activity compared with some of our overseas colleagues, for 2011:

USA
(launch 2001) / UK
(launch 2003) / Australia
(launch Aug ‘07) / Germany
(launch Apr ‘07)
Tests / 308 / 248 / 223 / 208
Conditions / 117 / 105 / 102 / 36
Pages updated / 102 / 53 / 97 / 0
Visitors 2011 / 24,849,780 / 1,447,792 / 858,501 / 354,243
Traffic Growth / 4% / 24% / 42% / -19%

The research – who we canvassed and why

In 2011, we conducted a two-part research program to gain insight into the needs and motivations of our users and to explore ways of reaching others who might benefit. More broadly, we investigated public attitudes towards pathology in general. We also canvassed medical and health professionals about how they used the website and their views on its value for the people in their care.

We began with an online survey of 641 participants and from their responses we were able to identify the key user profiles by way of age, sex, location, education, etc and gather information about how they used labtestsonline.org.au. From this we were able to determine the relevant target audiences and the lines of questioning for the second part of the project - a series of focus groups. These were held in Sydney and Brisbane and included labtestsonline.org.au users,members of the public who’d had pathology tests at some time in the past but who had no experience of labtestsonline.org.au, hospital doctors, GPs, nurses, practice managers and other health professionals. We also interviewed pathology collectors, who by the very nature of their job, were considered to have special insight into the way the public experiences pathology.

A changing landscape

The research highlighted some important, fundamental changes taking place in healthcare. Easier access to medical information via the internet (it has been estimated that more than 80 per cent of people seek health information online) is giving people the resources for greater participationin their care.

At the same time, patients are now expecting freer access to their medical records including test results. Many of our focus group participants reported they were already having their test results passed on to them by their doctors and we observed a general acceptance among both public and medical professionals that this would soon become standard practice. Even the most change-resistant personalities considered this a good thing, although most people believed patients required interpretation of results in all but the most routine cases.

There is a global recognition of the benefits of greater patient self-management, especially among people with chronic illnesses. The notion that individuals not institutions take control of their care has been shown to improve outcomes and reduce risks. However, this shift in control and responsibility from medical practitioner to patient is clearly creating tensions.

Differences in attitudes

There was compelling evidence that the speed of changeis causing tensions. Some members of the public and some medical and health professionals are keenly embracing the opportunities; others are highly resistant to change. There was no pattern to this and views did not align with demographic patterns, age, sex or location.

While allour focus group participants accepted the internet was here to stay and that the majority of people turn there for health information, there were stark differences in their views on the benefits of informing patients to equip and support to play a part in their own care.

In the past, the role of the patient was largely passive. It was clear from our groups that some members of the public preferred it stay this way and have their doctors tell them what to do. They seemed to have high expectations of their doctors, yet were generally disappointed in their experiences. They complained about the paucity of good doctors who could communicate well. They acknowledged that many doctors were time-poor. They encountered many medical mishaps and had plenty of anecdotes to tell about “things going wrong”. They believed their GPs did not want them “to know too much” and were fearful of being seen to be challenging medical opinion.

Others, especially those with experience of serious or chronic illnesses, firmly believed in the benefits of participation. They wanted to ensure they did not “fall through the cracks”. They actively researched health information and reported, as a consequence, successful working partnerships with those treating them. The appeared to have the respect of their doctors and they enjoyed the enhanced control over their care.

Equally, the majority of nurses, practice managers, pathology collectors and other health professionals were highly enthusiastic about patient education, saw clear benefits in patient participation in care and believed it important that people had access to trustworthy information.

However, there were vast differences between the views of medical practitioners. Our hospital doctors, who were Sydney-based and in their 30s and 40s, were excited by labtestsonline.org.au and found it an indispensible tool for informing patients. They used it on the wards and thought it essentialpeople were equipped to participate in managing their care “…making patients partners in care, actually having informed conversations with them rather than trying to knock it back to basics and doing it in an incredibly short timeframe”. “If they get the right information, it makes our life a whole lot easier.”

However, our group of GPs, who were from a broad range of suburban Brisbane practices and mostly in their 50s and 60s, were far more conservative and protective of their roles as the ‘gatekeepers’ of healthcare. All but one group member, did not want patients independently seeking information lest they became confused: “I'm not saying that they are not entitled to the information, but it takes years of experience and learning and that to actually understand why you do this and why you don't do that.”

Looking in from the outside, it appeared that in maintaining strict control of the information patients received, our GPs were creating an environment in which patients remained passive and their expectations could often be unrealistically high. At the same time, they were setting themselves up to take the blame if outcomes did not match anticipation. As one pathology collector put it: “Doctors are God…If there is something wrong the doctor’s going to look after me.” (Collector, Brisbane)

The benefits of an informed and empowered public

We encountered many people who were enthusiastic about the way the information they had obtained from labtestsonline.org,au had empowered them and had enhanced their relationships with their medical and health professionals. Many had experienced serious, life threatening illnesses at some time in the past.

Pathology collectors, who are at the ‘coal face” of pathology testing and as part of their daily work frequently help patients disseminate often confusing information, saw benefits in being able to refer people to credible sources. This was a view shared by nurses, practice managers and other healthcare professionals.

“They have asked for their results. Doctors have given them a printout. Maybe have not explained everything to them and they have come into me, "What does this mean?" I say "You are asking the wrong person". (Pathology collector, Brisbane)

“I think they get overwhelmed with the doctor bombarding them with information, in a short amount of time to get ready for the next patient. So to sit down and be able to relax and read something would be better for them.” (Collector, Brisbane)

“I think a lot of people … don't want to appear silly or dumb in front of their doctor by asking. So it gets them out of that predicament.” (Collector, Brisbane)

“As a nurse, I also try to get people to be aware of what's being done to their body and what they are investigating. So knowledge is important for them to have because then they can participate better in decisionmaking.” (Nurse, Sydney)

The issues surrounding the limited public knowledge of pathology

The research confirmed that the majority of the public have little understanding of the pathology process. They do not pause to consider what happens between the sample being taken and the results appearing on their doctor’s desk. There appears to be little, if any, thought given to how samples are tested and who undertakes this. Many in our focus groups believed tests were performed by ‘machines’ or ‘computer chips’ with no expert human intervention. In the public mind, the doctor holds the expertise for interpreting results and making the diagnosis.

“Just that it is spaceage now, that they have the computer chips, where you put a fraction of the blood drop on and it is a total test kit itself and it will generate a result straight away; plug into the machine and it generates it.” (General public, Sydney)

“Does a human look at it? No, totally bypassed, they use chips…the images that you see in the media of people fiddling with machines and it looks like they are just feeding the samples in one end and getting the results out the other end.” (General public, Sydney)

“I have noticed that when you get a pathology report back it will come with some sort of letter, so they must do some level of analysis on it.” (General public, Sydney)

Placing a value on pathology

The backroom nature of diagnostic pathology and the general lack of public awareness mean little value is attached to the service. This is an important message for all those involved in the delivery and funding of pathology – government, public and private pathology providers, as well as the professionals who work in laboratories - pathologists and scientists.