Introduction

Health care delivery founded on the principles of patient-centred health care is widely held as a core aim of healthcare providers around the world. In order for healthcare providers to become patient-centred they need to understand what it is, why it is important and how to practice it. This understanding will lead to improved health outcomes as health care is provided in a way that better meets the needs of patients. 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.

In March 2012, IAPO (International Alliance of Patients’ Organizations) launched its Patient-Centred Healthcare Indicators Review. As the initial stage of a wider project being undertaken by IAPO to develop a set of process and outcome indicators of patient-centredness, the review identified and assessed current initiatives which aim to measure the patientcentredness of organi zations, countries, activities and any other relevant stakeholders involved in health care. Following its launch at IAPO’s 5th Global Patients Congress [1], the review was opened for consultation to all IAPO members and a variety of other stakeholders involved in health care. The responses were summarised in a short paper [2] and a final version of the review was published in October 2012 [3].

This paper will outline the methodology, findings and conclusions of the final Patient-Centred Healthcare Indicators Review, highlighting potential next steps in the development of a robust set of indicators to measure patient-centredness.

Methods

Literature for this review was identified through searches on PubMed, Web of Science, Google Scholar, as well as Internet searches to identify any government or organization technical reports or documents, or assessment tools. Websites of organizations known to be involved in patient-centred health care were also searched. Search terms incorporated different synonyms for ‘patient-centred health care’ used across the world, with the addition of terms such as ‘indicators’, ‘measures’, ‘evaluation’. An indicator was defined as ‘measures of structure, process and outcome, either as generic measures relevant for all diseases, or disease-specific measures that describe quality of patient care related to a specific diagnosis’ [4].

Only documents which described or developed indicators to measure patient-centredness specifically, which were written in English were included in the review. There was no date restriction for the documents. All literature was reviewed to determine applicability and the different elements of each mapped. The key points of reference in assessing identified literature were IAPO’s five principles of patient-centred health care; respect, choice and empowerment, patient involvement in health policy, access and support, and information, as detailed in the IAPO Declaration on Patient-Centred Healthcare [5].

Findings

Ten sets of current and proposed indicators for measuring patient-centred health care at the system level were identified. These ranged from the development of specific indicators for the entire health system, hospital settings or primary care settings, to more general indicator recommendations. The indicators were generally split into different domains, for example, access or information, depending on how patient-centredness had been defined. ‘Example indicators’ from two different sets of indicators identified for the domain of choice and empowerment are: appropriate information is available to enable all consumers and carers where appropriate to choose to share in the decision-making about their care [6]; and percentage of primary health care clients/patients, 18 years and over, with a chronic condition(s), who actively participated in the development of a treatment plan with their primary health care provider over the past 12 months [7].

Two studies from peer-reviewed scientific journals were identified which developed indicators for patient-centred cancer care, and one for patient-centred fertility care. These papers utilized established guidelines for care, interviews and focus groups with patients, and expert and health professional panels in the development of indicators. Example indicators developed for the domain of communication from three peerreviewed studies are: if no curative options are available, the healthcare provider should emphasize that the patient will receive optimal palliative care and that the healthcare provider will not leave the patient to his/her fate [8]; specialist shows interest in the patient as a person [9, 10].

A wide range of self-assessment tools were identified. These can be used to identify the essential structures and systems that need to be in place for a provider to become patient-centred. These were generally split into domains starting from mission, vision and leadership to communication and information, to environment and workforce. Two indicators for the domain of leadership from two different tools are: the organization’s commitment to patient-centred health care is formally and consistently communicated with patients, families, staff, leadership, and medical staff [11]; leaders of the organization, through words and actions, consistently convey that the patient’s and family’s experience of care matters, that it is important to quality, safety and the best outcomes [12].

Additionally, a large number of patient experience surveys were identified which are used by governments, private healthcare providers, hospitals and organizations to explore patient views and opinions. We also identified a number of stakeholders involved in health care such as health professional associations and the healthcare industry, for example, pharmaceutical, health insurance and medical device companies, which have shown some internally driven efforts towards patient-centredness.

Discussion

The Patient-Centred Healthcare Indicators Review illustrates the fact that there are few well-defined and coherent system levels or governmental indicators currently available. Of the system level indicators identified, 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 of Patient-Centred Healthcare [5], 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. Furthermore, the majority of indicators identified failed to demonstrate patient involvement in their development which IAPO would assert is fundamental to the development of patient-centred healthcare indicators.

The large number of self-assessment tools and patient experience surveys identified may demonstrate that there is too much focus upon organizational improvement through checklists. Such an approach places emphasis upon ticking boxes rather than promoting debate and reflection in order that patient-centred health care becomes an integral element of the philosophy of organizations, governments and health care providers.

IAPO suggests the use of the ‘patient journey’ as a logical framework for measuring patient-centredness. The ‘patient journey’ begins the moment an individual suspects there might be something wrong, up until treatment and on-going management. Patient-centredness can thus be measured at individual points along the ‘patient journey’, while still ensuring that patient-centredness as a whole can be assessed. We also suggest that while current measures, as described in the Patient-Centred Healthcare Indicators Review, may be useful in providing a basis for a patient-centred approach, the combination of quantitative and qualitative indicators such as patient narratives would provide a deeper and more accurate measure of patient-centredness.

A set of indicators for all aspects of health care from service delivery, access to care, medical products, vaccines and technologies such as biosimilar medicines, to information, education and self-management, to health workforce and health systems management, need to be identified or developed. They are essential for shaping priorities and identifying changes that need to be made to ensure that health care meets the needs of those it serves. Patients must be at the centre of efforts to develop relevant indicators, as well as evaluating them. Potential next steps for IAPO include exploration into the critical drivers for patient-centred health care and barriers to such an approach, review of patient-centred health care initiatives in low and middle income countries and identification of data that is currently being collected. Additionally, the development of a set of guiding principles for the development of indicators to measure patient centred health care is essential to ensure indicators are measurable and achievable.

Author

Yasemin Dil, MSc
Researcher
International Alliance of Patients’ Organizations
49-51 East Road
London N1 6AH, UK

References

1. International Alliance of Patients’ Organizations. IAPO 5th Global Patients Congress. Achieving patient-centred healthcare: indicators of progress and success; 2012 March 17–19; London, UK. Available from: www.patientsorganizations.org/congress
2. International Alliance of Patients’ Organizations [homepage on the Internet]. Patient-centred healthcare indicators review. Consultation report. 2012 [cited 2013 Feb 13]. Available from: www.patientsorgani-zations. org/attach.pl/1441/1485/IAPO%20Consultation%20Report.pdf
3. International Alliance of Patients’ Organizations [homepage on the Inter-net].Patient-centredhealthcareindicatorsreview.2012[cited2013Feb13]. Available from: www.patientsorganizations.org/indicatorsreview
4. Mainz J. Defining and classifying clinical indicators for quality improvement. Int J Qual Health Care. 2003;15(6):523-30.
5. International Alliance of Patients’ Organizations [homepage on the Internet]. Declaration on Patient-Centred Healthcare. 2006 [cited 2013 Feb 13]. Available from: www.patientsorganizations.org/ declaration
6. World Health Organization [homepage on the Internet]. People-Centred Healthcare Initiative National Indicators Project. World Health Organization Western Pacific Region. 2010 [cited 2013 Feb 13]. Available from: www.patientsorganizations.org/attach.pl/1438/1332/ PCH%20Indicators%20Review.pdf
7. Canadian Institute for Health Information [homepage on the Internet]. Pan-Canadian primary health care indicators, Report 1. 2006;1. Available from: www.cihi.ca/CIHI-ext-portal/pdf/internet/ PDF_PHC_INDI_REPORT1VOL2_EN
8. Uphoff EP, Wennekes L, Punt CJ, Grol RP, Wollersheim HC, Hermens RP, et al. Development of generic quality indicators for patient-centered cancer care by using a RAND modified Delphi method. Cancer Nurs. 2012 Jan-Feb;35(1):29-37. doi:10.1097/NCC.0b013e318210e3a2
9. Ouwens M, Hermens R, Hulscher M, Vonk-Okhuijsen S, Tjan-Heijnen V, Termeer R, et al. Development of indicators for patient-centred cancer care. Support Care Cancer. 2010 Jan;18(1):121-30. doi: 10.1007/ s00520-009-0638-y
10. van Empel IW, Aarts JW, Cohlen BJ, Huppelschoten DA, Laven JS, Nelen WL, et al. Measuring patient-centredness, the neglected outcome in fertility care: a random multicentre validation study. Hum Reprod. 2010 Oct;25(10):2516-26. doi:10.1093/humrep/deq219
11. Planetree and Picker Institute [homepage on the Internet]. Self-assessment tool for organizations. 2008 [cited 2013 Feb 13]. Availablefrom:www.patient-centeredcare.org/inside/selfassessment.html
12. Institute for Patient- and Family-Centred Care and American Hospital Association [homepage on the Internet]. Strategies for leadership, patient- and family-centred care: a hospital self-assessment inventory. 2004 [cited Feb 13]. Available from: www.aha.org/advocacy-issues/ quality/strategies-patientcentered.shtml