Setting the bar for measuring patient outcomes

As head of the International Consortium on Healthcare Outcome Measurement (ICHOM), Christina Åkerman has made it her mission to turn the concept of value-based healthcare from buzz word to reality.

“The challenge is to determine how we know we are getting good value from health services,” she told Science|Business. “We see ourselves as a catalyst for unlocking the full potential of value-based healthcare by bringing together patients and experts to set the standard for good outcomes.”

The problem is that there has been too little focus on the end results: how does a medical intervention change patients’ daily lives?

Even in cases where results are measured and published, there are several serious challenges. For a start, the outcomes are often defined by clinicians with little or no input from patients; comparing outcomes is impossible if hospitals or countries are measuring different things; and where comparisons can be made, considerable variations in outcomes are exposed.

“When we measure survival and complications for common surgeries there are significant differences in patient outcomes between countries and within countries, even when we account for other differences in patient populations,” says Åkerman.

The task ICHOM has set itself is to define standard sets of patient outcomes, and encourage transparency, in an effort to raise standards across the board. Not only could this directly benefit patients in clinics or regions with sub-par results, it would iron out health inequalities and encourage more efficient spending.

“If we could get the best outcomes for patients then we would reduce inefficiencies and free up resources that we currently spend on treating patients whose outcomes are not as good as they should be,” Åkerman says. “That’s the whole idea behind value-based healthcare; it’s why ICHOM was established.”

ICHOM was co-founded by Harvard economist, Michael Porter in 2012, to give life to the proposition in his book ‘Redefining Healthcare’, co-authored with Elizabeth Olmsted Teisberg, that measuring outcomes is the way to understand value in healthcare.

Instead of paying for activity, such as the number of patients treated or tests performed, healthcare providers should be paid for results. Specifically, the goal is to deliver outcomes that matter to patients for the lowest price.

Turning this into practice is far from straightforward, not least because the fee-for-service model is so well entrenched in most mature health systems.  

Outcomes that matter

The first gap to fill was defining which outcomes matter to patients. To help figure this out, Åkerman and her team bring together patients, patient groups, carers and health professionals to establish a set of core outcomes for medical conditions. These are the essential results that should be measured, such as mortality, complication rates and quality of life assessments.

ICHOM started by looking at some of the biggest drains on healthcare resources, including heart failure, prostate cancer, cataracts and dementia. With the input of 300 working group members, the consortium has now completed 21 standard sets and a further eight are in train. By later this year, ICHOM standards will cover 50 percent of the global disease burden.

“Interest in the standard sets has dramatically increased and we are now working with the OECD to build on the work we have done to date,” Åkerman says. ICHOM and the OECD signed a letter of intent in January 2017, formalising their commitment to collaborate on the collection, analysis and publication of patient-reported outcomes for international comparison.

How it works

Producing a standard set takes between 9 – 12 months, and at any given time several working groups may be drafting standard sets in parallel.

The groups scan the medical literature to see what has been published on outcome measures for their field. They then meet around eight times, usually virtually but sometimes at global congresses.

Each working group has a chairman, a dedicated research fellow and the support of an ICHOM research associate to pull together material for discussion. The first four calls define which outcomes matter and get input from focus groups with patients and their representatives. The second four explore factors that influence outcomes and may contribute to variation, such as the case mix handled by various hospitals.

To get a holistic view of a disease or treatment, an industry roundtable is organised. “Innovators, medtech and medicines companies have an opportunity to bring their knowledge to the working group near the end, but they are not allowed to directly influence the standard sets,” said Åkerman. “The group looks at all available treatments while focusing on the full cycle of care.”

After that there is an open review period where any interested party can comment on the standard outcomes agreed by the working group. The final step is the submission of an article to a peer-reviewed journal.

After the job is done and the group disbands, a small steering committee, including the chair of the working group, keeps the standards under review. The committees incorporate feedback from people who use the standard sets and update them to account for new research findings.

Measure, compare, learn

The standard sets can be used to compare outcomes both between health providers and between countries. “We hope policymakers see this as an opportunity to learn from others, to improve outcomes, and reduce variation at a national and international level,” says Åkerman.

They can also be used to determine what level of care should be provided when care is being commissioned. “This is a chance to move from fee-for-service to paying for results,” Åkerman said.

The practical task of collecting outcomes can be challenging, as technology and data-handling skills vary considerably between institutions and healthcare systems. While recording outcomes on paper is better than nothing, Åkerman says technological advances are making it easier to collect and compare outcomes in real-time.

This wealth of data could be used to build decision-making tools that allow patients to see with some precision how people like them fare if certain treatment paths are followed. “The younger generation expect to have an app or health coach that can understand their condition and what outcomes might matter to them if they are a keen skier or love gardening,” Åkerman noted. “Then they want to know where the best place is to have the procedure.”

Such intelligent apps require a vast quantity of data. That is why, in parallel with developing standard sets, ICHOM is working to make data interoperable. “It’s not enough to define outcomes and determine when they should be measured, we need to think about how they should be captured,” Åkerman says.

Outcome inequality

Looking ahead, ICHOM’s work will highlight outcome inequalities that have previously been obscured. “Patients haven’t realised that differences in health outcomes exist,” says Åkerman. “We have been too accepting of this for too long. If people know more about health outcomes they may demand better standards across the board.”

Genesis of a Standard Set from ICHOM on Vimeo.