In October 2012, the International Alliance of Patients’ Organizations (IAPO) published its Patient-Centred Healthcare Indicators Review and accompanying Consultation Report. 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 healthcare. It includes examples from WHO, national health systems and hospitals, amongst others. Indicators of patient-centredness relevant to activities, organizations and countries can support the development and implementation of patient-centred policies and be applied by healthcare providers to measure the extent and quality of their work towards being patient-centred.
The Patient-Centred Healthcare Indicators Review identifies 11 sets of current and proposed indicators for measuring patient-centred healthcare 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. The review illustrates that there are few well-defined and coherent system level and government indicators currently available.
The key point of reference for the review was the five principles of IAPO’s Declaration on Patient-Centred Healthcare. Of the indicators identified, there was an uneven spread across the five principles with emphasis on indicators of access and information, and fewer indicators 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, which 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 on organizational improvement through checklists, when patient-centredness should be at the core of any health organization or system.
As identified by the Patient-Centred Healthcare Indicators Review, indicators with which to measure the impact of patient-centred healthcare and its place in health systems are lacking. In addition, there are global disparities in the availability of indicators to measure patient-centred healthcare, with the majority identified in the review being from developed countries. To address these gaps, the review recommends the use of the ‘patient journey’ as a framework for measuring patient-centred healthcare. This allows the focus to be narrowed down at specific points along the journey, so that patients’ experiences can be measured at points of interaction with different levels of the health system.
Patient-Centred Healthcare in Africa
In a region with more than 24% of the global burden of disease while having only 11% of the global population, access to only 3% of the world's health workers, 70% of the world’s HIV burden, large inequities in the treatment and prevention of disease, lack of medication, and lack of resources which make even basic patient safety techniques difficult to achieve, one may wonder how patient-centred healthcare can be realised in Africa. In a resource constrained environment, how can a health system be designed with the involvement of patients, inclusive of patient and community led initiatives? Can this provide the solution to Universal Health Coverage and stronger health systems? While indicators for such interventions cannot yet be cited to evidence their effectiveness, the work of patient and community led organizations in Africa demonstrate the value of these approaches and their potential to create sustainable and long-term improvement to health systems. This depends on whether they are properly recognised and supported as partners in the healthcare system.
While data may be lacking on the outcomes of the involvement of patients’ organizations there is evidence that women’s groups and health education by peer counsellors can improve the health of mothers and children in low resource settings. A systematic review and meta-analysis of seven randomized controlled trials (119,428 births) in Bangladesh, India, Malawi and Nepal on the effects of women’s groups practising participatory learning and action on maternal and newborn health revealed that that exposure to women's groups was associated with a 55% reduction in maternal mortality and a 33% reduction in neonatal mortality. Such evidence makes clear the importance of community led interventions in improving maternal and child health, and provides the opportunity for further research into the wider health implications of patient and community involvement in healthcare. At the core of these interventions a patient-centred approach is evident.
IAPO has twenty-seven member patients’ organizations and three associate patient-centred health professional organizations, working to improve healthcare in the African region (as defined by WHO). These organizations raise public awareness on key healthcare issues including the control, prevention and management of both communicable and non-communicable diseases, patient safety and health literacy. Patients’ organizations also promote healthy lifestyles, and facilitate access to preventative services and quality treatments. Their connection with patients at the community level means that they have an in-depth understanding of patients’ needs and can provide insights into the most appropriate and cost-effective interventions which will meet the needs of the communities they serve. They are perfectly placed to help their governments and Ministries of Health develop indicators for measuring patient centredness, which IAPO’s review shows are currently lacking in the African region. Putting indicators in place, both quantitative and qualitative, will allow different sectors of the health system from community level to national, to benchmark their work and improve both their approach to providing healthcare and accountability to the patients they serve. This will help improve the quality of care provided to those patients and better health outcomes overall.
The benefits of involving patients’ organizations in the design and delivery of healthcare can be demonstrated by IAPO member, the Community Health and Information Network (CHAIN) in Uganda. In 2012 CHAIN reached nearly twenty-seven thousand people through its programmes which included; promoting health literacy in Uganda through strengthening community partnerships; HIV counselling and testing; anti-retroviral treatment in partnership with the AIDS Support Organization (TASO) Uganda; education on sexual reproductive health and rights; support for orphans and vulnerable children; community and school outreach to raise awareness on HIV prevention; and hand washing and sanitation sensitization in communities. CHAIN works in partnerships with the WHO Uganda Country Office, Ugandan Ministry of Health, National Drug Authority, members of the Ugandan Alliance of Patient Organizations and IAPO, among others. They provide vital links between patients, communities, healthcare providers and healthcare professionals, working in collaboration towards patient-centred healthcare.
Dialogue with the people that healthcare is meant to serve is the only way that healthcare interventions can be effective, long-term and sustainable. Patient and community led organizations are in contact with many of the most marginalized and vulnerable communities in the African region, providing an often unrecognised resource, to strengthen health systems and improve lives. A shift in the emphasis of the UN post 2015 development agenda for health, from top down to patient and community led initiatives, ensuring their involvement in all aspects of healthcare delivery and design, will empower patients’ organizations and community groups to make real improvements in health. On 30 October 2013, patients across the African region will come together to celebrate Patient Solidarity Day to raise awareness of patient-centred healthcare in the region. They will call on all healthcare stakeholders to “Improve lives through patient-centred healthcare” and bring attention to the vital role of their organizations in the communities they serve. We invite you to join us on Patient Solidarity Day. For more information about Patient Solidarity Day please visit www.patientsolidarityday.org.
Authors: Yasemin Dil and Caroline Staffell, IAPO
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