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The value of health information

Over the last decade, both state and federal governments have pursued greater knowledge and information around public service delivery, with the intent of improving performance and increasing efficiency and equity.

There is no better example than the MyHospitals website, which provides performance information on key public hospital outcomes, such as financial performance, waiting times and hospital-acquired infections.

But there are many other types of information within the healthcare system:

• Clinicians make decisions based on medical literature, treatment guidelines, their own experience and those of their peers, as well as ‘signals’ provided by decision support systems.
• Patients make decisions based on information received from their healthcare professional, their own preferences and experiences, and those of others, and alternative information sources such as Google, and
• Providers use historical and real-time information every day to maintain clinical quality, improve performance and ensure they remain fiscally sustainable. Information is also sought by government to formulate policy and make funding decisions.

Processing health information

Despite the abundance of information available, the healthcare system is complex and characterised by a high level of decision uncertainty among patients, clinicians, providers and governments. This stems partly from incomplete information, such as unobservable patient characteristics, unknown disease impacts, and the outcomes from care.

Another issue is information asymmetry, with providers holding more information than patients on treatment effectiveness, and members knowing more about their health status than private health insurers.

Patients also find it difficult to process complex health information. Clinicians and patient support groups help patients better understand their potential treatment options and health outcomes, and to navigate the healthcare system, but many are still left confused. And while international research suggests people feel empowered when offered a choice of provider, many find it difficult to interpret performance information.

In addition, people sometimes make ‘wrong’ decisions when seeking information for their own diagnostic purposes: they escalate their health concerns based on information sourced from the web that can be erroneous, incomplete or both, and they often lack the necessary health literacy to correctly interpret the information. Dubbed ‘cyberchondria’, this phenomenon has encouraged people to access healthcare services unnecessarily, wasting valuable health resources: research undertaken by Microsoft found that only 25 per cent of people who sought medical attention based on a web search had a condition that justified that medical attention.

Barriers that limit information value

Mountains of health information are being generated on a daily basis with IBM predicting medical data will double every 73 days by 2020. They have developed a super computer [Watson Health], which can read 40 million documents in 15 seconds, to provide clinical decision support within the ever-changing information landscape.

Frequently, however, information is not shared with the right people and organisations. Many patients – especially those with chronic conditions – access a multitude of health services that each collect bits of information. Better sharing of that information across primary, acute and community care providers could generate insights into developing better quality care, tailored to individual needs.

Do we need more information?

More information certainly has the potential to reduce uncertainty in decision making and the likelihood of poor decisions leading to reduced health outcomes. It helps the decision maker optimise their objectives, whether maximising health, or minimising health resource wastage.

But the value of information depends on a multitude of factors, including the level of uncertainty, the likelihood that additional information may change a decision, the cost of making a wrong decision, and the cost of collecting and using health information.

Its value also depends on whether decisions based on new information are implemented.

Measuring the value of additional health research is particularly fraught with difficulties given that research is often used to develop further research and therefore does not lead to immediate translational outcomes. Benefits may only be realised decades into the future.

Health economists, such as those working at Macquarie’s Centre for the Health Economy, have been exploring the value of conducting further research to inform healthcare decisions using a method called ‘value of information analysis’. This method uses statistical decision theory to estimate the benefit of a decision from collecting additional information compared with a decision made using existing information. Then, after subtracting the cost of conducting the additional research, the net value of additional information is estimated.

This methodology has been used to determine whether additional information is needed when deciding to fund drugs and medical devices, preventative programs and medical research. It has also been used to determine the optimal sample size in clinical trials. But it often assumes that any optimal decision can be implemented perfectly – unlikely given the structural rigidities, communication barriers and limited funding that characterise the healthcare system.

Taking the long-term view

The prolific collection of information within the healthcare system will continue unabated into the future, along with advances in information technology to help us better understand that information. Some information will be essential given increased treatment choices and healthcare complexity.

Empowering patients to make better choices about their own healthcare needs through information on quality, independent from their clinician, can remove some of the market failures inherent in our healthcare system.

For health researchers, the proliferation of information presents an enormous opportunity to develop new ideas that can generate exciting research. And most importantly, it can also improve the lives of Australians.

This is an excerpt from The Value of Health Information by Henry Cutler, published in Sirius. Read the complete article.