A proper assessment of health outcomes is essential for optimal and successful performance of health systems.
Health outcomes refer to the impact healthcare activities have on people — on their symptoms, their ability to do what they want to do, and their state of health.
They include whether a given disease process gets better or worse, the costs of care, and how satisfied patients are with the care they receive[1]. As recognised in the European Commission Communication on “Effective, accessible and resilient health systems”, harmonised health outcomes measurement is essential to health system performance[2]. The International Consortium for Health Outcomes Measurement (ICHOM) also confirms that generating meaningful information on patient outcomes is essential for health systems to ensure continuous improvement[3].
However, health outcomes – most commonly measured as indicators of healthcare systems performance – are mainly focused on elements that do not seem to matter to the people to whom they should matter the most, patients.
In fact, most conventional metrics tend to measure quantitative, numerical, pre-determined or fixed outcomes. These include the number of clinical admissions, length of stay in hospital and interventions, complications, relapse, mortality and infections rates. On other occasions, measurements address condition-specific indicators, for example smoking-cessation counselling and initiation of appropriate medications after myocardial infarction[4].
While these outcomes are certainly important and useful, they do not always show the full picture. Research has shown that there is a clear gap between what is traditionally measured and what really matters for patients the most.
Patients are more interested in factors such as quality of life, functional ability and emotional well-being. It is indicative, for example, that the primary concerns for breast cancer patients are worries about being tired in the future, health insurance or financial issues, family counselling and support[5]. In addition, though traditional process and outcome measures work well for relatively healthy patients with single diseases, they may be inappropriate for patients with multiple conditions, severe disability, or short life expectancy[6].
Finally, for most areas of clinical research, among the myriad of outcomes, there has been little guidance for selecting those that are most important and feasible. Consequently, there is significant heterogeneity in the outcomes used and reported, as well as how they are defined and measured. This heterogeneity results in significant wastage of research resources[7].
An alternative approach to providing better care would be to focus on a patient’s individual health goals within or across a variety of dimensions, including symptoms, physical functional status, mobility, social and role functions, and determine how well these goals are being met[8].
Luckily, attempts are being made to move more and more towards patient-centred outcomes models.
Organisations that have been active in this sense include ICHOM, whose mission is to unlock the potential of value in healthcare by defining global standard sets of outcome measures that really matter to patients for the most relevant medical conditions and by driving adoption and reporting of these measures worldwide.
The OECD is also playing an important role in helping identifying what makes healthcare more successful and have recently announced their work aiming to accelerate the adoption of patient-reported indicators, or outcomes[9]. Patient-reported outcomes are any reports of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. The OECD has found that It is only when outcomes reported by patients themselves are measured – such as quality of life – that important differences in the outcomes of care emerge[10].
In the current wake of rethinking health systems, it is becoming increasingly apparent that patient-centric health outcomes and measurement cannot be left out in the attempt to help drive improvements and renovation.
Improving health outcomes and their measurements should not simply be seen as a matter for health policy. Better health can make a very important contribution to economic and social goals through longer working lives, greater productivity, reduced disability claims, better educational outcomes, and reduced social exclusion[11].
Identifying and measuring meaningful health outcomes, however, is just the very first step. The next question to be considered and answered should be about how data can be used to drive improvements in health care quality[12]. For example, it is crucial that health outcomes are linked to new reimbursement and payment systems, which reward based on performance and meaningful outcomes for patients, rather than volumes.
Only in this way we could start putting patients back at the heart of care.
[1] My Health Outcomes website: http://myhealthoutcomes.com/faqs/3000
[2] European Commission, Communication on “Effective, accessible and resilient health systems”, 2014, Brussels
[3] ICHOM website: http://www.ichom.org/
[4] David B. Reuben, MD, and Tinetti ME, Goal-Oriented Patient Care — An Alternative Health Outcomes Paradigm, 2012, N Engl J Med
[5] Wang X1, Cosby LG, Harris MG, Liu T., Major concerns and needs of breast cancer patients, 1999, Cancer Nurs
[6] Agostini JV, Bogardus ST Jr, Tinetti ME, Potential pitfalls of disease-specific guidelines for patients with multiple conditions, 2004, N Engl J Med
[7] van‘t Hooft J, Alfirevic Z, Asztalos E et al., CROWN initiative and preterm birth prevention: researchers and editors commit to implement core outcome sets, 2017, BJOG Int J Obstet Gynaecol
[8] David B. Reuben, MD, and Tinetti ME, Goal-Oriented Patient Care — An Alternative Health Outcomes Paradigm, 2012, N Engl J Med
[9] OECD, PaRIS Patient – Reported Indicators Survey. The next generation of OECD health statistics, 2016
[10] Ibid.
[11] WHO European Ministerial Conference on Health Systems, The Tallinn Charter: Health Systems for Health and Wealth, June 2008, Tallinn
[12] The Value of Health, Enhancing Value in European Health Systems. The Role of Outcomes Measuremen (consensus document), 2015, Brussels