Submitted: 9 January 2013; Revised: 11 January 2013; Accepted: 15 January 2013; Published online first: 22 January 2013

In October 2012, the International Alliance of Patients’ Organizations (IAPO) launched its final Patient-Centred Healthcare Indicators Review and accompanying consultation report [1]. The review forms the initial stage of a wider project being undertaken by IAPO to develop a set of process and outcome indicators of patient-centredness. Indicators of patient-centredness relevant to activities, organizations and countries can support the development and implementation of patient-centred policies and be applied by relevant stakeholders to measure the extent and quality of their work towards being patient-centred. The review identifies and assesses current initiatives, which aim to measure the patient-centredness of organizations, countries, activities and any other relevant stakeholders involved in health care. It includes examples from World Health Organization, national health systems, hospitals and others.

The Patient-Centred Healthcare Indicators Review identifies 11 sets of current and proposed indicators for measuring patient-centred health care at the system level. These range from the development of specific indicators for the entire health system, hospital settings or primary care settings, to more general indicator recommendations. Two sets of indicators for patient-centred cancer care and one set of indicators for fertility care that were developed and reported in peer-reviewed scientific papers were identified. A wide range of self-assessment tools, seven of which are discussed in the results, and a large number of patient-experience surveys, a variety of which are discussed, were also found.

The Patient-Centred Healthcare Indicators Review illustrates that there are few well-defined and coherent system level or governmental indicators currently available. Of the system level indicators identified in the review, most focused upon hospital or primary care as opposed to the health system as a whole. There was an uneven spread of indicators across the five principles of IAPO’s Declaration on Patient-Centred Health care [2], with emphasis on indicators for access and support and information, and fewer relating to patient choice, empowerment and respect. Only two system level indicators identified included indicators for patient-involvement in policymaking. The review highlights that the majority of the literature discussed in the results did not demonstrate patient involvement in the development of these indicators that IAPO asserts is fundamental to the development of patient-centred healthcare indicators. Furthermore, the large number of self-assessment tools and patient experience surveys may reveal that there is too much focus upon organizational improvement through checklists, when patient-centredness should be at the very core of any organization or health system.

The Review highlights that patients’ needs could be framed by looking at the ‘patient journey’. The ‘patient journey’ is comprised of all the different points of healthcare contact relating to an individual patient, from the moment that they suspect something may be wrong with their health, to the point where a condition or a disease is managed on an on-going basis. The ‘patient journey’ may provide a logical framework for understanding and measuring patient-centred health care. Patient-centredness can be measured at individual points along the ‘patient journey’, while still ensuring patient-centredness as a whole can be assessed. The review highlights a number of suggested indicators for measuring patient-centredness along the ‘patient journey’.

Based on the feedback from a wide range of stakeholders to the Patient-Centred Healthcare Indicators Review, IAPO is currently exploring ways to develop a set of indicators and looking into the possibility of conducting a pilot study; including the possibility of tailoring the relevance of its patient-centred indicators to individual countries. IAPO believes patients must be at the centre of efforts to develop relevant indicators, as well as evaluating them.

Disclosure of financial and competing interest: This study was funded with an unrestricted educational grant from Novo Nordisk.

Provenance and peer review: Not commissioned; internally peer reviewed.

References
1. International Alliance of Patients’ Organizations. (2012) Patient-Centred Healthcare Indicators Review. Available from: www.patientsorganizations.org/indicatorsreview.
2. International Alliance of Patients’ Organizations Declaration on Patient-Centred Healthcare. [homepage on the Internet] 2013 [cited 2013 Jan 11]. Available from: www.patientsorganizations.org/declaration.

Disclosure of Conflict of Interest Statement is available upon request.

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