Abstract
In Sweden the health system is nationally regulated and locally provided by 21 regions and 290 municipalities. To meet the shifting paradigm, where the person is viewed as a co-producer of health and care, Sweden has laws, regulations and policies which support the patient as an active partner in the communication with professionals in the system. Coproduction, person-centred care and shared decision making contribute jointly to the paradigm shift. Principles of human dignity and equity must be supported nationally and enacted in the decentralized, regional provision of care. Infrastructures exist or are under development which can support and strengthen care that is co-produced and based in a person-centred philosophy and approach, where shared decision making becomes a reality in practice. A Knowledge management system together with National Quality registries have the potential to form a co-produced, person-centred learning health system, where patients, and next of kin and professionals are included as partners. The joint integration of Shared decision making, Person-centre care and Coproduction into the Swedish healthcare system now looks like a possible way to realize the emerging paradigm.
Zusammenfassung
In Schweden ist das Gesundheitssystem staatlich reguliert; für den lokalen Zugang sind die 21 Regionen und 290 Gemeinden verantwortlich. Um dem Paradigmenwechsel, bei dem jeder Einzelne als Koproduzent von Gesundheit angesehen wird, Rechnung zu tragen, hat Schweden Gesetze, Verordnungen und Vorschriften erlassen, welche die Rolle des Patienten als aktiver Partner in der Kommunikation mit Gesundheitsfachkräften stützen. Koproduktion, personenzentrierte Versorgung und partizipative Entscheidungsfindung tragen gemeinsam zu diesem Paradigmenwechsel bei. Die Grundsätze der Menschenwürde und der Gerechtigkeit müssen national gefördert und im Rahmen der dezentralen regionalen Gesundheitsversorgung umgesetzt werden. Infrastrukturen, die eine Gesundheitsversorgung auf der Basis von Koproduktion und einer personenzentrierten Philosophie und Herangehensweise unterstützen und stärken können, bestehen bereits oder sind im Aufbau begriffen. So wird partizipative Entscheidungsfindung in der Praxis zur Realität. Ein Wissensmanagementsystem im Verbund mit nationalen Qualitätsregistern hat das Potenzial, ein koproduziertes, personenzentriertes, lernendes Gesundheitssystem zu schaffen, in das Patienten, deren Angehörige und Gesundheitsfachkräfte als Partner einbezogen sind. Es sieht jetzt so aus, als sei die gemeinsame Integration von partizipativer Entscheidungsfindung, personenzentrierter Versorgung und Koproduktion in das schwedischen Gesundheitssystem eine Möglichkeit, um das neue Paradigma zu verwirklichen.
Introduction
Around the world, as well as in Sweden, there is an ongoing paradigm shift in health care ideology. The view of a passive patient has been abandoned for the view of the person as a co-producer of health and care. To support this paradigm shift, several theories, frameworks, and tools have emerged and are under continuous development: coproduction/co-design, person-centred care and shared decision making (SDM). We mean that they jointly contribute to the paradigm shift aimed for in laws and policies and we will in this paper include the contribution of each in the Swedish context. In addition, we will explore how these contributions can align with national strategies in Sweden for improved health built on partnerships between patients and next of kin, professionals, as well as other stakeholders in an integrated health system.
Background of the Swedish healthcare system
Sweden’s universal health system is nationally regulated and locally administered. There are three levels of governance; the Ministry of Health and Social Affairs set overall policies, while 21 regions finance and provide healthcare services and 290 municipalities are responsible for care for the elderly and persons with disabilities. The regional- and municipal-levels finance the care with taxes. Grants are also provided by the central government to even out disparities among regions and municipalities. Minor sums are paid out of pocket for visits and medication. The universal coverage includes in- and outpatient care, mental health, dental care, and subsidized medication. Regions are also responsible for public health. The Swedish Association of Local Authorities and Regions (SALAR) represents the regions and municipalities in negotiations and agreements with the Ministry of Health and Social Affairs. At the national level, there are eight government agencies involved in medical care and public health. These national agencies are important for national unity, since healthcare provision is decentralized, which is of special interest in a period of the paradigm shift mentioned above.
The national healthcare system stands on three principles, which are to be enacted in the decentralized, regional provision of care [
]: 1) human dignity - all human beings have an equal entitlement to dignity and 2) have the same rights regardless of their status in the community, those in greatest need have precedence, 3) cost-effectiveness – costs related to improvement in health and quality of life.
The paradigm shift described initially, is supported in Sweden through laws and policies, where the autonomy of the person is obliged to be protected. The Health Care Act (2017:30) has since 1982 emphasized respect and sensitivity for the individual's specific needs, expectations, and values. The Patient Act (2014:821), which came into force in January 2015, shows more clearly than previous legislation that the patient's position must be strengthened, and that the patient's integrity, self-determination and participation must be promoted. In the Patient Safety Act (2010:659) care and treatment should be designed and implemented in consultation with the person. The Social Services Act (2001:453), states that the activities of the social services shall be based on respect for people's right to self-determination and integrity and the service shall be designed and implemented together with the individual user. However, the latest evaluation (2014-2017) of the Swedish Agency for Health Care Analysis (2017:2), points to ‘the Patient Act as a law without impact’. The shortcomings are specifically related to the care's availability, participation, continuity, and coordination. In a recent follow-up of the impact of the Patient Act, the Swedish Agency for Health Care Analysis (2021:10) still, points out unchanged development on information, participation, and choice of treatment options. The decentralized system with the regions as responsible for provision of care, means that there are regional differences in how laws and policies are put to practice. This can be an advantage if the opportunity to learn from each other on ‘what works’, but it also carries a risk for inequity in opportunities for patients and populations.
Coproduction and co-design, Person-centred Care and Shared Decision making in Sweden
Several areas of knowledge have been established to support the development of intentions in laws and policies i.e., how to build partnerships between patients/next of kin and health professionals, philosophies, and approaches to acknowledge the person behind the word patient and strengthening the patients’ voice. In Sweden, we notice especially three such lines of development; Coproduction/co-design, Person-centred care and Shared decision making (SDM) which will be further explored below.
Coproduction and co-design
Batalden et al (2016), [
[2]- Batalden M.
- Batalden P.
- Margolis P.
- et al.
Coproduction of healthcare service.
] illustrate that coproduction is central in all kinds of healthcare and social services. A fundamental shift is to reframe care as a service rather than production – and a service is always coproduced. They define coproduction as the joint activity of a service user and professionals, to support and generate better health. The activity contains co-creation, co-designing, co-delivering, co-assessing, and co-evaluating the actions that contribute to better health [
[2]- Batalden M.
- Batalden P.
- Margolis P.
- et al.
Coproduction of healthcare service.
]. The lived experiences of patients and next of kin need to be respected and weighed into joint decisions regarding care. In other words, the focus is on what matters for the patient, and it can be guided, among other ways, by patient reported measures [
2- Batalden M.
- Batalden P.
- Margolis P.
- et al.
Coproduction of healthcare service.
,
3- Elwyn G.
- Nelson E.
- Hager A.
- et al.
Coproduction: When users define quality.
], which will be illustrated later. In Sweden, infrastructures have been built for the development of research and practical application of coproduction, one example is the Centre for Coproduction at Jönköping Academy. Co-design is one way to improve the performance of existing health services, where the service users are actively involved in the design, evaluation, and improvement of the services [
[3]- Elwyn G.
- Nelson E.
- Hager A.
- et al.
Coproduction: When users define quality.
]. In Sweden, especially the concept of Experience based co-design has been adopted and used both in research and in practice [
[4]- Ramfelt K.
- Åkesson K.
- Petersson C.
Experiences From a Coaching Program for Parents of Children and Adolescents With Type 1 Diabetes Developed Through Experienced-Based Co-Design (EBCD).
].
Person-centred Care
The Centre for Person-centred Care at Gothenburg’s University (GPCC) has impacted the spread and adoption of a person-centred care philosophy/approach in Swedish Healthcare (
https://www.gu.se/en/gpcc). The three cornerstones of person-centred care can be defined as: 1) listen to the patient's story, 2) co-create a health plan using shared decision-making and 3) documenting the health plan [
[5]- Ekman I.
- Swedbergh K.
- Tafta C.
- Lindseth A.
- Norberg A.
- Brink E.
- et al.
Person-Centered Care – Ready for prime time.
]. This approach has proven to be valuable for healthcare improvement, learning, and the development of caring relationships and collaboration. Even though there are various models for person-centred care they all share a common base on a humanistic approach. The person behind the disease is the expert based on their perceptions and experiences. The staffś effort is to try to understand reality from the patient́s perspective whereby listening to the patient's story is central to person-centred care. If the patient can no longer convey their story, it is the staff's mission to interpret and try to understand the patient perspective. The Person-centred Practice Framework [
[6]T, McCance Person-centred nursing: Theory and practice.
] comprise of five components that enable successful person-centred care: societal perspective; prerequisites for person-centred care; the context of care; person-centred processes; and person-centred results. However, society and healthcare must be organized in a way that provides a realistic condition for a person-centred care. Society's attitudes and norms, skills supply and strategic management are three important aspects to consider. The physical environment and the organization affect the care as well as professional teamwork where the skills of the health care professionals can be integrated and utilized. Care must be based on the patient's values, the staff's genuine commitment, shared decision-making, conscious presence, and a holistic view of the person. A successful person-centred care approach can result in well-being, involvement, and participation as well as a healing care culture.
Shared Decision making
Structured working methods to promote shared decision-making in Sweden are vague and there are misconceptions about how the working method is implemented. In the ‘Swedish agency for health technology assessment and assessment of social services’ preparation paper [
], shared decision-making means that patient and healthcare professionals together decide on appropriate treatment options, considering of both parties' knowledge, available evidence and patient values and priorities. Even though Sweden today does not have a statutory requirement for a working method based on SDM, care- and treatment-decisions are made in collaboration with the patient and/or family members. Such discussions are conducted with reference to patient involvement both in the everyday life of the health care system and in the management of care and treatment. One example to learn from, for further development of SDM in Sweden, is related to people diagnosed with Schizophrenia or Schizophrenic Conditions. Since 2013, the National Board of Health and Welfare, has recommended SDM as a working method for this target group. This working method is emphasized in National guidelines [
] supporting decision makers concerning the allocation of resources within health and social care. The goal of these guidelines is to contribute towards patients and clients receiving a high standard of medical care and social services. A structured work based on SDM is one way the care can live up to legislation on information, participation, consent, and individual planning. From PsykosR, the Quality Register (NQR) for Swedish psychosis care, several indicators are picked out. One indicator will evaluate shared decision making as a working method. Based on those indicators the National Board of Health and Welfare are planning an evaluation of care and treatment for schizophrenia and schizophrenia-like conditions. However, one challenge will be to stimulate the units to report to PsykosR, because this NQR has yet a low coverage. To ensure the full impact of the Patient Act, the Swedish Agency for Health and Care Services Analysis recommends strengthening the patient's legal status as well as care efforts. Thus, there is a need to translate empirical research into practice within all disciplinary areas. During the last 10 years, several, so-called ‘knowledge-support’ has been published where the National Board of Health and Welfare has compiled evidence-based guidance on micro-, meso- and, system level, for how person-centredness can permeate health care and social services [
,
,
]. However, the use of the knowledge supports is sparse in everyday clinical practice.
Towards a co-produced, person-centred, and national learning health system
Supporting infrastructures that currently exist and are under development can support and strengthen the move towards care that is coproduced/codesigned and person-centred, where SDM becomes a necessary working method. Meeting the challenges of future healthcare services is a shared understanding of how healthcare services contribute to better health outcomes. One determined factor for healthcare systems wishing to support patients and the community to optimize health, is to learn to partner with patients in all aspects of care re-design. We will give some examples of how a learning health system can be shaped/promoted, which is a precondition for stimulating person-centred approaches from macro to micro level. The integration of the Knowledge management system and the National Quality registries (NQR) described below have the potential to form a Co-produced, person-centred Learning Health System, where patients, and next of kin are included as national partners for co-design and coproduction.
The Knowledge Management System
Person-centeredness and the understanding that care should be designed around patients’ needs, preferences and well-being is central in Swedish healthcare services (
Figure 1). This was early on defined as one of six characteristics for good, high-quality care, adopted from the Institute of Medicine, USA [
[12]Institute of Medicine (IOM). Crossing the Quality Chasm: A New Health System for the 21st Century, Washington D.C, National Academy Press, 2001.
] and integrated into many healthcare policies internationally, including Sweden (Institute of Medicine, ‘God Vård’ in Swedish). A movement in healthcare and welfare systems towards increased patient engagement can be followed by central principles: deliver evidence-based care, developing team-based approaches and shared decision making and targeting care to patient and community needs [
[13]- Cosgrove D.M.
- Fisher M.
- Gabow P.
- Gottlieb G.
- Halvorson G.C.
- James B.C.
- et al.
Ten strategies to lower costs, improve quality, and engage patients: the view from leading health system CEOs.
]. These central principles were the basis for developing a ‘knowledge management system’ in Sweden, which was launched 2017. At a system level, patient engagement is built on the inclusion of patient representatives in each clinical diagnosis based working group. These groups have the task to identify, best evidence, care delivery plans and quality indicators to be measured to provide feed-back in each care process. In 2019 a national plan for patient engagement was created, where routines and recruitment processes were described [
]. Altogether, each working group at the national level has at least one patient or next-of-kin representative to contribute with lived experience and patients’ perspectives [
]. Research based evaluation of this initiative is ongoing.
National Quality Registries
The purpose of National Quality Registries (NQRs) is to collect outcome measures for care processes and patient outcomes in different disease groups to be used both for improvement and research [
]. NQRs are intended to serve as vehicles for continuous feedback in real time and provide opportunities for identification of challenges in healthcare for example, how well evidence-based guidelines are followed as well as inequity in healthcare provision and outcomes. Integrated into the knowledge management system, described above they form a basis for a ‘learning health system (LHS)’ [
[16]- Olsen L.A.
- Aisner D.
- McGinnis J.M.
The Learning Healthcare System: Workshop Summary Institute of Medicine (US) Roundtable on Evidence-Based Medicine.
]. The NQRs thus become an integrated patient-focused part in a system for monitoring treatment results linked to individual diagnoses, medical assessments, and medical results [
[17]- Jakobsson Ekman G.
- Lindahl B.
- Nordin A.
National Quality registries in Swedish Health Care.
]. Swedish studies show that NQR:s can also lead to results being visible to other stakeholders and new forms of data use, especially with a focus on patient processes and results [
[18]- Norman A.C.
- Elg M.
- Nordin A.
- Andersson Gäre B.
- Algurén B.
The role of professional logics in quality register use: A realist evaluation.
]. One example of the latter process is a co-produced dashboard, initially developed by the Swedish Rheumatology registry (SRQ) which works as a ‘feeding forward system’, where clinical information and patient-reported information identify key matters which are displayed in real time (dashboards). This enables discussion, shared decision-making, and support to track outcomes by both the patient and the clinician [
[19]- Lindblad S.
- Ernestam S.
- Van Citters A.D.
- Lind C.
- Morgan T.S.
- Nelson E.C.
Creating a culture of health: Evolving healthcare systems and patient engagement.
]. Still, the registries are underused in relation to improvement and patient partnership. We see the emerging infrastructure of coproduced, person-centred LHS as an opportunity to support the initially described paradigm shift, i.e., an opportunity to use and build on experiences, theories, frameworks, and tools presented in this paper. Further development and co-design of open and easy access to real-time quality data could positively contribute to coproduction and joint understanding between patients/next of kin and healthcare professionals. On the individual level, the registries can contribute to an improved basis for SDM. If we demand open, real-time, and accessible quality data and engage patients in reviewing and discussing results, this can contribute to a strengthened focus on quality of care and inclusion of relevant patient-reported outcome variables [
[20]- Nilbert M.
- Aagaard Thomsen L.
- Winther Jensen T.
- Moller T.
- Borre M.
- Widenlou Nordmark A.
The power of empirical data: lessions from the clinical registry initiatives in Scandinavian cancer care.
].
Integrated Care (in Swedish ‘God och Nära vård’) – a natural basis for the new paradigm
The Swedish Integrated care model is based on the person-centred approach, starting from the person's individual conditions, abilities and needs. Most studies of the implementation of person-centred centred care are conducted at hospitals whereas studies within primary care are still scarce. However, reviews show that it requires close interprofessional collaboration and a strong focus on prevention and health-promoting measures to create optimal care practices in the municipality [
[21]- Ebrahimi Z.
- Patel H.
- Wijk H.
- Ekman I.
- Olaya-Contreras P.
A systematic review on implementation of person-centered care interventions for older people in out-of-hospital settings.
]. Integrated care claims close collaboration between in-patient care, primary care, and municipal care. The transition involves many actors who need to co-operate which in turn requires a strong, courageous, and sustainable leadership at all levels [
]. Integrated care is expected to improve patients’ experiences of care interaction, continuity, and person-centred and cohesive care as well as an increased focus on health promotion, disease prevention and equal care [
].
The Patient contract
A lot of work is still required to create high quality, safe integrated care which meets the varied needs of citizens, and which provides best possible care, every time for every patient. As part of the continued adjustment, the government and the regions have agreed to introduce the ‘Patient Contract’ [
,
,
]. The purpose of the ‘Patient Contract’ is to ensure participation, coordination, accessibility, and collaboration, from a patient perspective, through a joint agreement between the patient and the caregiver. This in line with the cornerstones of person-centre care in terms of co-creation, shared decision-making, and documentation. The Patient contract is a model that consists of several parts: agreement, cohesive planning, permanent care contact and agreed time and availability of identified health care needs. From a system perspective successful use and fulfilment of the goals with the patient contract will require: an increased will and understanding between organizational units, ‘a person-centred approach’ among health and social care professionals and a deepened partnership with patients as well as the surrounding society. In the latter ‘process competence in SDM will be crucial’.
Patient and public involvement
A systematic literature review of SDM in Sweden is ongoing, funded by the National Board of Health and Welfare. Thirty-two published papers were analysed during the years between 1985 and 2020. Of the 32 identified papers, 16 were classified as discussion papers where 10 papers were from ethical perspectives and published for 10 years, between 2007 and 2017. Three papers were literature reviews, and seven papers were on development and validation of SDM tools. Six papers were classified as empirical papers. The first empirical paper was published in 2017, one in 2018, two in 2019 and one in 2020. Only one [
[27]- Schön U.K.
- Grim K.
- Wallin L.
- Rosenberg D.
- Svedberg P.
Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study.
], was classified as an implementation paper and concerned psychiatric care. Four papers had a focus on SDM-tools, where three evaluated psychometric properties of SURE, CollaboRATE, Dyadic option [
28- Broström A.
- Pakpour A.H.
- Nilsen P.
- Hedberg B.
- Ulander M.
Validation of CollaboRATE and SURE – two short questionnaires to measure shared decision-making during CPAP initiation.
,
29- Rosenberg D.
- Schön U.K.
- Nyholm M.
- Grim K.
- Svedberg K.P.
Shared decision making in Swedish community mental health services – an evaluation of three self-reporting instruments.
], and SDM-Q-9, SDM-Q-DOC-9 [
[30]- Nejati B.
- Lin C.C.
- Imani V.
- Browall M.
- Lin C.Y.
- Broström A.
Validating patient and physician versions of the shared decision-making questionnaire in oncology setting.
]. Two papers described the development and validation of decision aids starting from the national quality registers. So far research on patient decision aids is limited in Sweden, but a few studies [
31B. Hedberg, A. Erdner, L. Os Stølan, J. Riise, J. Møllerhøj, D. Stacey. E. Jedenius. Developing a patient decision aid for choosing anti-psychotic medication in schizophrenia, using an iterative participatory process. (Manuscript ready for submission. spring 2022).
,
32A. Jervaeus, R. Hultcrantz, A. Kottorp, D. Sjöberg. Woudstra, A. Forsberg, K. Franklin, S. Fuentes, B. Hedberg, A. Fritzell. Development and implementation of a patient decision aid for individuals invited to (CRC) screening in Sweden. (Protocol paper in fall 2022)
] are underway to be developed and tested in practice, where also IPDAS quality criteria will be considered under the development process.
Several initiatives have been tested during the last decade to support coproduction and how person-centred care can be used in clinical practice. One example is the person-centred approach starting with the question “what is best for Esther”? The Esther network have since the start 1997 been spread around the country and even worldwide. Esther network is focusing on the needs of the elderly population. The focus in using “Esther” is to help caregivers, professionals, patients, and families to work promoting, and improving the complex care around elderly people. The use of “Esther” as a symbolic person, with complex care needs who requires coordination and integration of care between hospital, primary care, home care, and community care is helpful and supports the care planning to be person-centred [
,
34What is “quality improvement” and how can it transform healthcare?.
]. Another example is networks of persons with experience of psychiatric care (Peer support) with skills to participate in development efforts and education. This approach is co-designing training in recovery-oriented approaches in psychiatry [
].
Education
Education is an important part of the transformation into the new paradigm of care. Education can also be seen as another important infrastructure for sustainable improvement, described by Batalden and Davidoff [
[35]- Johnson J.K.
- Batalden P.
- Foster T.
- Arvidsson C.
- Batalden M.
- Forcino R.
- Andersson Gäre R.
A starter’s guide to learning and teaching how to coproduce healthcare services.
] in the ‘Triangle’ i.e., better professional education/better system performance and better population health. In different ways is the concepts coproduction, person-centred care and SDM integrated in Swedish education. For example, coproduction is provided in an international web-based course on advanced level, recently launched at Jönköping Academy. Faculty and persons with lived experience co-design the course and coproduce the teaching. In addition, there are some ongoing initiatives to develop models for the integration of coproduction/co-design competencies into residency training [
]. Person-centred care is an overall learning objective at Swedish Universities within all health-care educational programs at a university level following same structure.
However, there are no specifically stated learning objectives where SDM is mentioned in any curricula in educational programs that lead to a license to work in health care. More common are learning outcomes on general topics related to SDM, such as communication, interrelationship, partnership, autonomy, and other subjects, important skills when interacting with patients. An additional learning outcome is how apply the Patient Act's intentions, where knowledge support and methods for strengthening the patient's position, is crucial and a challenge for Swedish healthcare educations.
International collaborations
For more than a decade, a national platform for quality improvement in health care education has been developed in Sweden. The goal is to establish the subject of improvement, including co-production in health care educations at the university level, and to build networks and unify driving forces between organizations, professions, academia, and healthcare. The national network has close cooperation with the Summer Symposium for Health Professions Educators in US, founded by Professor Paul Batalden at the Dartmouth Institute in 1983.
The international coproduction health network (ICoHN) [
] is an initiative to support learning in different communities of practice with patients, practitioners, students, and researchers to explore coproduction in healthcare. This network is a collaboration between Sweden – Jönköping Academy for Improvement of Health and Welfare and in the US, the Dartmouth Institute for Health Policy and Clinical Practice. In the network, knowledge dissemination on coproduction and SDM is supported by several communities of practice and a series of podcasts presented on a webpage (https://icohn.org). Furthermore, the network provides learning opportunities in an international series of seminars “CoLab” every month.
With an overall goal to increase competence in SDM and communication in consultations between patients and healthcare professionals, a Nordic conference was co-produced 2020 between Norway (Universitetssykehuset Nord-Norge HF), Denmark (Region Hovedstaden), and Sweden (Jönköping Academy, Jönköping University). Due to the pandemic, the conference has been moved to 2023, and will then be a help to establish an SDM network in Scandinavia.
Conclusion/Final remarks
In summary, we have mandatory laws and regulations for the integration of person-centred care and the Patient Contract. These starting points give us the opportunity to approach SDM as an appropriate way of working. We have only a few scientific studies from Sweden in this area. The linkage between the concepts presented in this paper is coproduction - that care as a service is always co-produced which makes the dialogue and shared understanding central in all types of care. We also see that person-centeredness is a kind of philosophical foundation in the ecosystem of health and social care (
Figure 1). However, even if many good examples exist today, they are still islands in the large system. Although, we see a promising future considering that the infrastructures that are under development include patients, next of kin, and citizen representatives. In the future, the integration of the three concepts (coproduction, person-centred care and SDM) can together, strengthen the patient, next of kin and citizen perspectives in accordance with what is intended and agreed on nationally.
When more SDM tools, such as patient-based decision support, are developed, psychometric tests are developed/translated, validated, and used and when education in health and welfare have learning objectives that relate to coproduction, person-centred care and SDM – we believe the paradigm shift will be enhanced.
Conflict of interest
All authors declare that there is no conflict of interest.
CRediT author statement
All authors: substantial contributions to the conception or design of the work; or the acquisition, analysis; drafting the work or revising it critically for important intellectual content; final approval of the version to be published or publishable; agreement to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.
References
A.H. Glenngård. International Health Care System Profiles, Sweden (2020). In R. Tikkanen, O.R. Mossialos, E. Djordjevic, A. Wharton, G. The Commonwealth fund (2022) https://www.commonwealthfund.org/international-health-policy-center/countries/sweden
- Batalden M.
- Batalden P.
- Margolis P.
- et al.
Coproduction of healthcare service.
BMJ Qual. Saf. 2016; 25: 509-517https://doi.org/10.1136/bmjqs-2015-004315- Elwyn G.
- Nelson E.
- Hager A.
- et al.
Coproduction: When users define quality.
BMJ Qual. Saf. 2020; 29: 711-716https://doi.org/10.1136/bmjqs-2019-009830- Ramfelt K.
- Åkesson K.
- Petersson C.
Experiences From a Coaching Program for Parents of Children and Adolescents With Type 1 Diabetes Developed Through Experienced-Based Co-Design (EBCD).
J. Pat. Exp. 2020; 7: 1181-1188https://doi.org/10.1177/2374373520969005- Ekman I.
- Swedbergh K.
- Tafta C.
- Lindseth A.
- Norberg A.
- Brink E.
- et al.
Person-Centered Care – Ready for prime time.
Eur. J. Cardiovascular Nurs. 2021; 10: 248-251T, McCance Person-centred nursing: Theory and practice.
Wiley-Blackwell,
Chichester, West Sussex2010Swedish agency for health technology assessment and assessment of social services’ [in Swedish: Statens beredning för medicinsk och social utvärdering (SBU)]. Patientdelaktighet i hälso- och sjukvården. En sammanställning av vetenskapliga utvärderingar av metoder som kan påverka patientens förutsättningar för delaktighet, Stockholm, 2017. SBU-rapport nr 260, ISBN 978-91-88437-02-0. (Accessed 16 March 2022) https://www.sbu.se/contentassets/4065ec45df9c4859852d2e358d5b8dc6/patientdelaktighet_i_halso_och_sjukvarden.pdf
The National Board of Health and Welfare. [Socialstyrelsen] Swedish Guidelines for Psychosocial Activities in Schizophrenia or Schizophrenic Conditions. Stockholm. (Accessed 16 March 2022). https://www.socialstyrelsen.se/kunskapsstod-och-regler/regler-och-riktlinjer/nationella-riktlinjer/riktlinjer-och-utvarderingar/schizofreni/
The National Board of Health and Welfare. [Socialstyrelsen] Att ge ordet och lämna plats: vägledning om brukarinflytande inom socialtjänst, psykiatri och missbruks- och beroendevård. Socialstyrelsen: Stockholm. (Accessed 16 March 2022) https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/vagledning/2013-5-5.pdf
The National Board of Health and Welfare. [Socialstyrelsen] Din skyldighet att informera och göra patienten delaktig – Handbok för vårdgivare, chefer och personal. Socialstyrelsen: Stockholm. (Accessed 16 March 2022) https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/handbocker/2015-4-10.pdf
The National Board of Health and Welfare. [Socialstyrelsen] Vägar till ökad delaktighet: kunskapsstöd för socialtjänsten om arbete med stöd och service enligt LSS. Stockholm. (Accessed 16 March 2022) https://www.socialstyrelsen.se/globalassets/sharepoint-dokument/artikelkatalog/kunskapsstod/2017-12-21.pdf
Institute of Medicine (IOM). Crossing the Quality Chasm: A New Health System for the 21st Century, Washington D.C, National Academy Press, 2001.
- Cosgrove D.M.
- Fisher M.
- Gabow P.
- Gottlieb G.
- Halvorson G.C.
- James B.C.
- et al.
Ten strategies to lower costs, improve quality, and engage patients: the view from leading health system CEOs.
Health Aff. (Millwood). 2013; 32: 321-327SKR (2021) National System for Knowledge Management System [Nationellt system för Kunskapsstyrning. (Accessed 16 March 2022) https://skr.se/skr/halsasjukvard/utvecklingavverksamhet/systemforkunskapsstyrning.48276.html
M. Rosén. Guldgruvan i hälso- och sjukvården – förslag till gemensam satsning 2011–2015. (Accessed 16 March 2022) https://skr.se/download/18.45167e4317e2b341b24add5d/1642686824121/7164-613-2.pdf
- Olsen L.A.
- Aisner D.
- McGinnis J.M.
The Learning Healthcare System: Workshop Summary Institute of Medicine (US) Roundtable on Evidence-Based Medicine.
National Academies Press,
Washington (DC)2007: (US).- Jakobsson Ekman G.
- Lindahl B.
- Nordin A.
National Quality registries in Swedish Health Care.
Karolinska Institute University Press,
Halmstad2016- Norman A.C.
- Elg M.
- Nordin A.
- Andersson Gäre B.
- Algurén B.
The role of professional logics in quality register use: A realist evaluation.
BMC Health Serv. Res. 2020; 11: 1:107https://doi.org/10.1186/s12913-020-4944-x- Lindblad S.
- Ernestam S.
- Van Citters A.D.
- Lind C.
- Morgan T.S.
- Nelson E.C.
Creating a culture of health: Evolving healthcare systems and patient engagement.
QJM: Int. J. Med. 2017; : 125-129https://doi.org/10.1093/qjmed/hcw188- Nilbert M.
- Aagaard Thomsen L.
- Winther Jensen T.
- Moller T.
- Borre M.
- Widenlou Nordmark A.
The power of empirical data: lessions from the clinical registry initiatives in Scandinavian cancer care.
Acta Oncol. 2020; 59: 1343-1356https://doi.org/10.1080/0284186X.2020.1820573- Ebrahimi Z.
- Patel H.
- Wijk H.
- Ekman I.
- Olaya-Contreras P.
A systematic review on implementation of person-centered care interventions for older people in out-of-hospital settings.
Geriatric Nursing. 2021; 42: 213-224SALAR. God och nära vård 2020 – En omställning av hälso- och sjukvården med fokus på primärvården (2020). (Accessed 16 March 2022) https://www.regeringen.se/overenskommelser-och-avtal/2020/02/god-och-nara-vard-2020--en-omstallning-av-halso--och-sjukvarden-med-fokus-pa-primarvarden/
The National Board of Health and Welfare. (Accessed 16 March 2022) https://www.socialstyrelsen.se/kunskapsstod-och-regler/omraden/god-och-nara-vard/
SALAR (2021a). Patient Contract [Patientkontrakt). (Accessed 16 March 2022) https://skr.se/halsasjukvard/kunskapsstodvardochbehandling/primarvardnaravard/patientkontrakt.28918.html
SALAR (2021b) National Patient Questionnaire [Nationell patientenkät]. (Accessed 16 March 2022) https://skr.se/halsasjukvard/patientinflytande/nationellpatientenkat.617.html
SALAR (2021c). Patient Contract: method support, evaluation [Patientkontrakt: metodstöd, uppföljning]. (Accessed 16 March 2022) https://skr.se/skr/halsasjukvard/utvecklingavverksamhet/naravard/patientkontrakt/inforandestodpatientkontrakt/metodstoduppfoljning.28922.html
- Schön U.K.
- Grim K.
- Wallin L.
- Rosenberg D.
- Svedberg P.
Psychiatric service staff perceptions of implementing a shared decision-making tool: a process evaluation study.
Int. J. Qual. Stud. Health Wellbeing. 2018; 13: 1421352https://doi.org/10.1080/17482631.2017.1421352- Broström A.
- Pakpour A.H.
- Nilsen P.
- Hedberg B.
- Ulander M.
Validation of CollaboRATE and SURE – two short questionnaires to measure shared decision-making during CPAP initiation.
J. Sleep Res. 2019; 28: 12808https://doi.org/10.1111/jsr.12808- Rosenberg D.
- Schön U.K.
- Nyholm M.
- Grim K.
- Svedberg K.P.
Shared decision making in Swedish community mental health services – an evaluation of three self-reporting instruments.
J. Mental Health. 2017; 26: 142-149https://doi.org/10.1080/09638237.2016.1207223- Nejati B.
- Lin C.C.
- Imani V.
- Browall M.
- Lin C.Y.
- Broström A.
Validating patient and physician versions of the shared decision-making questionnaire in oncology setting.
Health Prom. Perspect. 2019; 9: 105-114https://doi.org/10.15171/hpp.2019.15B. Hedberg, A. Erdner, L. Os Stølan, J. Riise, J. Møllerhøj, D. Stacey. E. Jedenius. Developing a patient decision aid for choosing anti-psychotic medication in schizophrenia, using an iterative participatory process. (Manuscript ready for submission. spring 2022).
A. Jervaeus, R. Hultcrantz, A. Kottorp, D. Sjöberg. Woudstra, A. Forsberg, K. Franklin, S. Fuentes, B. Hedberg, A. Fritzell. Development and implementation of a patient decision aid for individuals invited to (CRC) screening in Sweden. (Protocol paper in fall 2022)
Esther - in English. Landstinget i Jönköpings län, Region Jönköpings län. (Accessed 6 April 2022) https://plus.rjl.se/esther?msclkid=8c38efe1b5a711ec82ff363930923191
What is “quality improvement” and how can it transform healthcare?.
Qual. Saf. Health Care. 2007; 16: 2-3https://doi.org/10.1136/qshc.2006.022046- Johnson J.K.
- Batalden P.
- Foster T.
- Arvidsson C.
- Batalden M.
- Forcino R.
- Andersson Gäre R.
A starter’s guide to learning and teaching how to coproduce healthcare services.
I J. Qual H Care. 2021; 33: 2 ii55-62https://doi.org/10.1093/intqhc/mzab131International coproduction network (IChON). (Accessed 16 March 2022) https://ju.se/center/ja/en/collaboration/icohn.html
Article info
Publication history
Published online: May 21, 2022
Accepted:
April 15,
2022
Received in revised form:
April 8,
2022
Received:
March 17,
2022
Copyright
© 2022 Published by Elsevier GmbH.
00066-6&id=gr1.jpg){kind=link}