EPF Survey Results - What Does Quality Care Mean to Patients?

During 2016, EPF surveyed patient representatives on how they perceive "quality" in healthcare and what matters most to them. A rich resource of information and patients' testimonies, the survey report makes fascinating reading.

A first conclusion that emerged from the EPF survey is that patients’ perception of “quality” is highly context-specific and encompasses many dimensions of healthcare. Important aspects of quality that were most often mentioned by respondents included:

• Being cared for as a person, not only as a diagnosis or number; being treated with empathy and respect, in a holistic way, i.e., with consideration to psycho-social, mental and family aspects of illness together with the physical aspects.
• Achieving good quality of life; including better health outcomes but also enabling a patient to keep as active in society as possible when living with a chronic condition.
• Collaboration between professional and patient, the patient being listened to and their concerns taken seriously; being an equal partner.
• Having time to talk with health professionals and enough information to support self-care.
• Having fast and unproblematic access to good standards of treatment, that is, up-to-date per latest scientific knowledge, given by well-trained professionals.

Despite comments that could be seen as critical and aspirational, most respondents felt the care they themselves had received recently had been of good quality. However, a minority of 7% said they had received bad or very bad care. 

When asked about the main change they would like to see in the health system, the top issue that emerged was access, including affordability, followed by better communication, more time for dialogue, and strengthening of the role of patients and civil society organisations in the system. Many patients are also worried about the pressures placed on healthcare staff, and the funding and resources available for the healthcare system. 

Our survey confirms that patients with chronic conditions are an important source of experiential knowledge, given that they are forced by necessity to seek healthcare – and social care – services more often than other people. Their perception of healthcare, experience of the care process, and evaluation of various indicators may also be different from that of the general population – something that is not reflected in generic surveys.

“Healthcare practices should be informed by feedback from patients”, Third EU Health Programme

Patients need to be recognised as full partners in their own care, and as full partners in service design and policy-making. Healthcare systems must re-think the way they interact with patients and families.

Our respondents were highly articulate about what they would like to see in terms of care, and where they see gaps. Their answers also present policy-makers with a challenge: how to capture the right things in evaluation metrics, so that “performance assessment” tools really measure what matters to patients. EPF proposes that it may not be possible to capture patients’ experience in numbers only; this does not mean that indicators are not useful, but that policy-makers, healthcare providers and practitioners need to look beyond numbers and invest in different, more qualitative methods of patient feedback.

In 2017 EPF will develop a formal position statement on quality of care, based on the results of this survey and other work we have undertaken with our member patient organisations.

For more information please contact: policy@eu-patient.eu