Asking people about their experiences and outcomes

3.3 Asking people about their experiences and outcomes

There are now well‑established ways of assessing patients’ experiences through Patient Reported Experience and Outcome Measures (PREMs and PROMs). PREMs provide insight into processes that affect patients’ experience, for example they ask patients about the time spent waiting and the quality of communication. PROMs focus on patients’ health and their health‑related quality of life. These ask patients for their views about post‑operative outcomes (say their capacity for doing everyday tasks after a knee replacement), distress, and pain levels among other things. They are less subjective than standard satisfaction measures, though they may also have a role and sometimes overlap.

There is evidence that PREMs and PROMs lead to better decision making and patient experiences (Breckenridge et al. 2015; Chen 2016; Duckett, Cuddihy and Newnham 2016). They are now widely used in the United States, the United Kingdom, Sweden and the Netherlands and for given diseases in a range of other countries (OECD 2017a; Williams et al. 2016a).

Patient experience measures can relate to specific types of events — for instance adverse events in hospitals — where their insights can add new dimensions to routinely‑collected data. As noted in a recent large‑scale study:

Specifically, patients can provide valuable information regarding problems with continuity of care, medication errors and communication between staff and with patients. The information from patients is critical to identifying incidents and ultimately to reducing patient harm, but they are not routinely asked to provide these data. (Harrison et al. 2015, p. 16)

Some Australian State Governments are piloting PREMs and PROMs (NSW for both measures, and Victoria for PROMs).¹¹ In NSW, the Bureau of Health Information collects various PREMs for hospital admissions across the state with a routine Adult Admitted Patient Survey (figure 3.3). The BHI has also undertaken targeted data collection for Aboriginal people (NSW BHI 2016). Other jurisdictions also undertake patient surveys in hospitals, though their methods and survey frequency vary (ACSQHC 2012). There are also various disease‑related registries across Australia that collect PROMs, such as the Victorian Cardiac Outcomes Registry (ACSQHC 2016b).¹²

Figure 3.3 A sample of the patient reported experiences for admitted patients in hospital emergency departments in NSWa

a The circles relate to hospitals in various NSW Local Health Districts. Data are typically April 2014 to March 2015.

Source: NSW Bureau of Health Information, Healthcare Observer from http://www.bhi.nsw.gov.au/.

The immediate universal rollout of new data collections that measure patient experiences and outcomes would be risky. Clinicians need to accept the legitimacy and value of the measures, and the compliance costs of data collection would be high unless the instruments, the associated IT and training were geared to reduce these. As users of the health system, Australians will need to know in plain English what PROMs and PREMs mean for them (‘Why am I filling out this questionnaire?’ ‘Why will it help me get better outcomes?). Such system changes require time and resourcing, and suggests pilots, as in Victoria and New South Wales, building on the experiences of other countries that have already implemented PREMs and PROMs.

The adoption of PREMS and PROMs should be accompanied by the development of guidelines indicating how clinicians, administrators and funders should reflect the outcomes of these measures in health care management. The guidelines should be co‑designed by all of the above parties in a collaborative effort, with the ACSQHC being a natural vehicle for progressing this.

conclusion 3.2 The realisation of patient‑centred care requires measures of how patients experience the system and their reports of the outcomes. This requires the development of well‑defined measures of people’s experience of care and the outcomes they observe (so‑called Patient Reported Experience and Outcome Measures — PREMs and PROMs), and integration of these into disease registries. The Australian Commission on Safety and Quality in Health Care (ACSQHC) would be the orchestrator of these developments, in consultation with State and Territory Governments, consumer groups representing patients, the various medical colleges, and specific clinicians with expertise in the relevant fields. PREMs and PROMS should not vary across jurisdictions. State and Territory Governments should commit to the development of PREMs and PROMS for primary and acute care, underpinned by an implementation timetable. The measures should initially be confined to pilots in given specialities and locations. Jurisdictions should agree on sharing information about pilots and on the evaluation strategies for them. Compliance costs and implementation risks should be an explicit consideration in forming the timetable. The ACSQHC should develop guidelines indicating how clinicians, administrators and funders should reflect the outcomes of PREMs and PROMs in health care management. Regardless, PREMs and PROMs should be published at the hospital level in all jurisdictions and potentially at the clinician level. If nothing else, clinicians should be informed about how patient experiences of their care compares with their peers. Publicly available PROMS and PREMs should be explained in plain English with the goal of being accessible to patients with a reasonable degree of health literacy.