The project focuses on a) Patient-Reported Experience Measures (PREMS), which measure how patients experience health care and refers to practical aspects of care, such as care co-ordination, waiting times and provider-patient communication; b) Patient-Reported Outcome Measures (PROMS), which measure how patients assess the results of the care they receive.
PROMS contain information about outcomes such as quality of life, pain, physical functioning and psychological well-being.
Underlying assumptions of PaRIS are that populations around the world are ageing and people with chronic conditions form the most rapidly growing group of healthcare users. In many OECD countries, around 2/3 of the population aged 45 and older have at least one chronic condition. Most of these people receive routine follow-up care in primary care, or other ambulatory care settings. Many receive care from different providers and face fragmented, un-coordinated care and, as a result, are at risk of receiving substandard care. For this group of patients, the OECD is currently unable to properly assess to what extent the care they receive makes a difference for them. Assessing the outcomes and experiences amongst them will shed light on whether the care patients receive contributes to better health results – they are more functional, more active, with less pain – and to a better experience of care – the care they receive is more seamless, and more tailored to their needs.
The main benefits of PaRIS are that the survey provides insight into what care really delivers to people. This information is essential to help policy makers better understand how their health systems are performing and how this could be improved. The survey will shed light on how successful health systems are and, in particular, how primary care, or other ambulatory care systems are responding to the needs of patients. It will tell what is working well in participating countries and identify the areas that require policy attention. Generating systematic data on outcomes and experiences is only a means to a goal: helping health systems becoming more people centred. Therefore, patients will ultimately benefit most from the PaRIS survey.
The PaRIS survey measures the outcomes and experiences of patients with one or more chronic conditions. The survey will include both Patient Reported Outcome Measures (PROMS) and Patient Reported Experience Measures (PREMS) for patients with chronic conditions. Examples of PROMS are ratings of peoples’ pain, physical functioning and psychological well-being. Examples of PREMS are peoples’ experiences with healthcare, such as experienced waiting times and communication with healthcare providers.
As well as a patient questionnaire, there was a provider survey to collect information on practice and provider characteristics.
All health care centres in Iceland were invited to participate in the provider survey. A random sample of patients were drawn from the population of all patients 45 years or older receiving services from the health care centres six months prior to data collection. The project started with a preliminary investigation and pre-testing of instruments in spring 2022. Data for the main study were collected in late fall of 2023.
Final report will be published in March 2025.
In collaboration with
Ragnheiður Ósk Erlendsdóttir, Director of Nursing Reykjavík Health Care Centre
Herdís Sveinsdóttir is a professor at the University of Iceland and Chair of research and development in nursing care of surgical patients for adult surgical patients in a joint position at Landspitali University Hospital in Reykjavik Iceland. She completed her PhD in Nursing from the University of Umeå in 2000, MS in Nursing from the University of Michigan, Ann Arbor in 1987 and BS in Nursing from University of Iceland in 1981. Her main research focus has been in women´s health, occupational health and nursing care of surgical patients. She has published extensively on those subjects.
Herdís is presently involved in a number of research projects as principal investigator or co-investigator, most of them with a national focus. She was the Dean of the Faculty of Nursing from 1989 until 1994 and again from 2017 to 2022, the president of the Icelandic Nurses’ Association from 1999 to 2003 and was a member of International Council of Nursing and the Nordic Federation of Nurses during the same time, she chaired the Workgroup of European Nurse Researchers from 2008 until 2012, has chaired and been a member of various central committees at the University of Iceland, including the Equal Rights Committee and the University of Iceland Research Fund.
Outside the University she has served on the board of the Administration of Occupational Safety and Health in Iceland, on the Research Center for Occupational Health & Working Life and on the Pension Fund for Nurses to name a few. She has given numerous presentations on her research nationally and internationally.
