The power of the patient’s voice in the modern health care system

Mental health is an important component of individual well-being and social participation. According to the Organisation for Economic Co-operation and Development (OECD) between one in six and one in five people experience a mental health problem in any given year and an estimated one in two people experience a mental health problem in their lifetime. There is a need to measure patients’ experience of mental health care delivery and effects of mental health treatment approaches [1–5]. Patients are in a unique position to contribute to the quality of health care since they are the only ones who experience the whole episode of care from primary care in communities through hospital care to rehabilitation and follow up in general practice. Health professionals in contrast experience only a snap shot of the entire patient’s journey in the health care system. Patients can make an indispensable contribution to setting the standards by which care should be judged by evaluating it and providing information that permits others to evaluate it [1]. It is the patient who should define what is desirable and undesirable and reporting what is accessible, convenient, comfortable and timely. Also, it is them who should inform to what extent they have been listened to, informed, involved in decision making and treated with respect and what outcomes should be pursued and what risks should be accepted [1]. Consequently, assessing patient experiences, satisfaction and outcomes (patient-reported experience measures (PREMs) and patient-reported outcomes measures (PROMs)) is essential component in any quality improvement enterprise. PREMs and PROMs are means to assure that the patient voice in health care will be heard and institutionalized [1, 2]. PREMs capture patients’ experience of health service delivery. PROMs provide patients’ perspective on their own health status and how it may have changed over the course of treatment. PREMs and PROMs are complementary and are meant to be used together to capture a more complete and person-centred picture of the patients’s journey and the impact as well as experience of health care they are receiving [1, 4]. This supplement focuses on how to include the patient voice in mental health, in terms of PREMs and PROMs. Two papers from OECD describe OECD’s international mandate and activities on developing and facilitating implementation of PREMs and PROMs among the 36 OECD countries [4, 5]. OECD underlines that patient representatives must have the opportunity to be involved across the entire spectrum of PROM/PREM development and use [4]. OECD underscores that the use of PREMs and PROMs remains limited since only few countries have reported that PROMs and PREMs are used on a regular basis in mental health settings [5]. Kristensen et al. describe how PROMs were developed in an iterative co-creation process involving patients and relatives together with clinicians has led to selection of a set of PRO items and a national measurement concept, ProPsychiatry, aims for PRO-based indicators, and patient recommendations for implementation. The co-creation processes presented underscore that it is old-fashioned to involve and include patients. Development of PREMs and PROMs should be a co-development and a co-design, where patients, relatives and healthcare providers serve as equal partners. Co-creation should determine the content of the measures, how they should be implemented and used and how results should be communicated to both service users and clinicians to improve care quality and delivery [6, 7]. Roe, Gelkopf and Mazor contributed two systematized reviews. The first reviewed the literature published from 2000 to 2018 on the implementation and sustainability of PROMs in mental health services for adults. The second review focused on numerous aspects of PROM implementation with useful findings that can guide future initiatives [8]. Gal et al. analyzed data of people consuming vocational services and their service providers. PROMs revealed that supported employment was associated with higher functioning only and consumers rated themselves higher compared to providers on all measures. Findings highlight the differences in perspectives between consumers and providers with regard to outcome measures [9]. Hochman et al. examined the association between PROMs and self-reported physical health at one year follow-up among. The results suggest that PROMs contribute to the prediction of poor physical health and thus can be useful as an early screening tool for people with serious mental illnesses living in the community who are at risk of physical health problems [10]. This supplement describes the value in using PROMs and PREMs to assess the quality and outcomes of mental health care. The different international initiatives and the results presented are promising. There is a need for continued international harmonisation of PROMs and PREMs for mental health as a key way to facilitate the sharing of national experiences, promote the use of PROMs and PREMs and create meaningful indicators for national and international benchmarking.