Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey)
IntroductionIn view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation...
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| Published in: | BMJ open Vol. 12; no. 9; p. e061424 |
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| Main Authors: | , , , , , , , , , , , , , , , |
| Format: | Journal Article |
| Language: | English |
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British Medical Journal Publishing Group
19.09.2022
BMJ Publishing Group LTD BMJ Publishing Group |
| Series: | Protocol |
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| ISSN: | 2044-6055, 2044-6055 |
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| Abstract | IntroductionIn view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey.Methods and analysisAs primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023.Ethics and disseminationInformed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world. |
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| AbstractList | Introduction In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey.Methods and analysis As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023.Ethics and dissemination Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world. IntroductionIn view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey.Methods and analysisAs primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023.Ethics and disseminationInformed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world. In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey.INTRODUCTIONIn view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how health systems perform from the perspective of people living with chronic conditions. The Organisation for Economic Co-operation and Development (OECD) Member States therefore mandated the OECD to initiate the International Survey of People Living with Chronic Conditions (PaRIS survey), which aims to provide insight in outcomes and experiences of care as reported by people living with chronic conditions. The PaRIS-SUR consortium has been tasked by the OECD to support the development and implementation of the survey.As primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023.METHODS AND ANALYSISAs primary care services play a pivotal role in the management of chronic conditions, the PaRIS survey will be implemented in the primary care setting. Data will be collected with a survey among users of primary care services aged 45 years or older, of whom many have chronic conditions. An additional survey is conducted among their primary care providers. The nested study design will allow analysis of the patient-reported data in relation to characteristics of and care provided by primary care providers within and across countries. In 2022, the survey will be tested in a Field Trial in participating countries. Data for cross-country comparison will be collected by the Main Survey in 2023.Informed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world.ETHICS AND DISSEMINATIONInformed consent will be obtained from primary care providers and service users. National Project Managers search ethical approval of the survey in their country, if required. Reporting by the OECD will focus on questions for international comparison. A secured information technology platform will be developed for participants and stakeholders in countries to receive feedback and answer their own questions. Findings will also be disseminated through an international OECD flagship report, conferences, scientific papers and policy briefs, to inform strategies to improve care for people living with chronic conditions throughout the world. |
| Author | Thomas, Laura Valderas, Jose Maria Williams, Rachel van den Berg, Michael Groenewegen, Peter Kendir, Candan Sunol, Rosa Klazinga, Niek Bloemeke, Janika de Bienassis, Katherine Ballester, Marta Boerma, Wienke Groene, Oliver Rijken, Mieke de Boer, Dolf Porter, Ian |
| AuthorAffiliation | 2 Organisation for Economic Co-operation and Development , Paris , France 7 Department of Sociology / Department of Human Geography , Utrecht University , Utrecht , The Netherlands 1 Nivel (Netherlands Institute for Health Services Research) , Utrecht , The Netherlands 4 Universitat Autònoma de Barcelona , Barcelona , Spain 5 Red de Investigación en Servicios de Salud en Enfermedades Crónicas , Barcelona , Spain 6 Optimedis AG , Hamburg , Germany 3 Fundacion Avedis Donabedian , Barcelona , Spain 9 Ipsos MORI UK Ltd , London , UK 8 Health Services and Policy Research Group , University of Exeter Medical School , Exeter , UK 10 Department of Family Medicine , National University Health System , Singapore 11 Department of Health and Social Care Management , University of Eastern Finland , Kuopio , Finland |
| AuthorAffiliation_xml | – name: 7 Department of Sociology / Department of Human Geography , Utrecht University , Utrecht , The Netherlands – name: 9 Ipsos MORI UK Ltd , London , UK – name: 3 Fundacion Avedis Donabedian , Barcelona , Spain – name: 11 Department of Health and Social Care Management , University of Eastern Finland , Kuopio , Finland – name: 2 Organisation for Economic Co-operation and Development , Paris , France – name: 5 Red de Investigación en Servicios de Salud en Enfermedades Crónicas , Barcelona , Spain – name: 10 Department of Family Medicine , National University Health System , Singapore – name: 1 Nivel (Netherlands Institute for Health Services Research) , Utrecht , The Netherlands – name: 4 Universitat Autònoma de Barcelona , Barcelona , Spain – name: 8 Health Services and Policy Research Group , University of Exeter Medical School , Exeter , UK – name: 6 Optimedis AG , Hamburg , Germany |
| Author_xml | – sequence: 1 givenname: Dolf surname: de Boer fullname: de Boer, Dolf organization: Nivel (Netherlands Institute for Health Services Research), Utrecht, The Netherlands – sequence: 2 givenname: Michael surname: van den Berg fullname: van den Berg, Michael organization: Organisation for Economic Co-operation and Development, Paris, France – sequence: 3 givenname: Marta surname: Ballester fullname: Ballester, Marta organization: Red de Investigación en Servicios de Salud en Enfermedades Crónicas, Barcelona, Spain – sequence: 4 givenname: Janika surname: Bloemeke fullname: Bloemeke, Janika organization: Optimedis AG, Hamburg, Germany – sequence: 5 givenname: Wienke surname: Boerma fullname: Boerma, Wienke organization: Nivel (Netherlands Institute for Health Services Research), Utrecht, The Netherlands – sequence: 6 givenname: Katherine surname: de Bienassis fullname: de Bienassis, Katherine organization: Organisation for Economic Co-operation and Development, Paris, France – sequence: 7 givenname: Peter surname: Groenewegen fullname: Groenewegen, Peter organization: Department of Sociology / Department of Human Geography, Utrecht University, Utrecht, The Netherlands – sequence: 8 givenname: Oliver surname: Groene fullname: Groene, Oliver organization: Optimedis AG, Hamburg, Germany – sequence: 9 givenname: Candan surname: Kendir fullname: Kendir, Candan organization: Organisation for Economic Co-operation and Development, Paris, France – sequence: 10 givenname: Niek surname: Klazinga fullname: Klazinga, Niek organization: Organisation for Economic Co-operation and Development, Paris, France – sequence: 11 givenname: Ian surname: Porter fullname: Porter, Ian organization: Health Services and Policy Research Group, University of Exeter Medical School, Exeter, UK – sequence: 12 givenname: Rosa surname: Sunol fullname: Sunol, Rosa organization: Red de Investigación en Servicios de Salud en Enfermedades Crónicas, Barcelona, Spain – sequence: 13 givenname: Laura surname: Thomas fullname: Thomas, Laura organization: Ipsos MORI UK Ltd, London, UK – sequence: 14 givenname: Jose Maria surname: Valderas fullname: Valderas, Jose Maria organization: Department of Family Medicine, National University Health System, Singapore – sequence: 15 givenname: Rachel surname: Williams fullname: Williams, Rachel organization: Ipsos MORI UK Ltd, London, UK – sequence: 16 givenname: Mieke orcidid: 0000-0001-6070-4091 surname: Rijken fullname: Rijken, Mieke email: m.rijken@nivel.nl organization: Department of Health and Social Care Management, University of Eastern Finland, Kuopio, Finland |
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| Snippet | IntroductionIn view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is... In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is available about how... Introduction In view of growing populations with chronic conditions, many countries are redesigning their health systems. However, little information is... |
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| SubjectTerms | Chronic illnesses Disease management Global health health policy Health Services Research international health services organisation of health services Patient satisfaction Primary care quality in health care |
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| Title | Assessing the outcomes and experiences of care from the perspective of people living with chronic conditions, to support countries in developing people-centred policies and practices: study protocol of the International Survey of People Living with Chronic Conditions (PaRIS survey) |
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