If you don't remember your password, you can reset it by entering your email address and clicking the Reset Password button. You will then receive an email that contains a secure link for resetting your password
If the address matches a valid account an email will be sent to __email__ with instructions for resetting your password
Corresponding author. Professor Karina Dahl Steffensen, MD, PhD. Center for Shared Decision Making, Lillebaelt Hospital, University Hospital of Southern Denmark, Beriderbakken 4, 7100 Vejle, Denmark.
Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, DenmarkInstitute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
Center for Shared Decision Making, Department of Clinical Oncology, Lillebaelt University Hospital of Southern Denmark, Vejle, DenmarkInstitute of Regional Health Research, Faculty of Health Sciences, University of Southern Denmark, Odense, Denmark
Department of Renal Medicine, Aarhus University Hospital, Aarhus, DenmarkDepartment of Clinical Medicine, Aarhus University, Aarhus, DenmarkResCenPI – Research Centre for Patient Involvement, Central Region Denmark & Aarhus University, Aarhus, Denmark
Legal and political landscape in shared decision making
Current Danish legislation empowers patients in securing their rights, but there are no present legislative developments in Denmark to support patient involvement. Policy initiatives within health care, however, show positive trends by, for example, including recommendations for shared decision making (SDM) in national clinical guidelines and the allocation of resources to fund projects in SDM. Within the last five years, three out of five regions have launched centers in patient involvement and SDM to focus on training, implementation of patient decision aids (PtDAs) and to foster the cultural change in SDM. A national dissemination of a template for easy building of PtDAs accessible via an online platform is one of the latest initiatives.
The way forward
Although the political discourse on SDM is gathering speed, an unclear definition and purpose of SDM is a barrier to real-life implementation. Politicians, leaders and clinicians seem to be moving at different paces and in different directions and are lacking consensus on SDM as a paradigm requiring training, leadership and a patient-centered mindset.
Conclusion
Many relevant initiatives are underway. However, SDM is also challenged by the lack of legislation and a central push for real SDM implementation in Denmark.
Zusammenfassung
Die rechtliche und politische Landschaft zur partizipativen Entscheidungsfindung
In der geltenden dänischen Gesetzgebung werden Patienten dazu ermutigt, ihre Rechte einzufordern, doch gibt es aktuell keine Entwicklungen in der Gesetzgebung, die eine Patientenbeteiligung unterstützt. Dennoch zeigen politische Initiativen im Gesundheitssektor positive Trends, da beispielsweise nationale klinische Leitlinien Empfehlungen zur partizipativen Entscheidungsfindung (PEF) enthalten und Mittel für entsprechende Projekte bereitgestellt werden. In den letzten fünf Jahren haben drei der fünf dänischen Regionen Zentren für Patientenbeteiligung etabliert, die auf Schulungen, die Implementierung von Entscheidungshilfen und die Veränderung der Kultur in Richtung PEF fokussieren. Die jüngste Initiative ist die landesweite Verbreitung einer Online-Plattform, auf der mithilfe einer generischen Vorlage Entscheidungshilfen erstellt werden können.
Der Weg nach vorn
Obwohl der politische Diskurs um PEF an Fahrt gewinnt, stehen ihrer Implementierung Unklarheiten hinsichtlich der Definition und des Zwecks von partizipativer Entscheidungsfindung im Wege. Politiker, Führungskräfte und Kliniker scheinen sich mit unterschiedlichen Geschwindigkeiten und in verschiedene Richtungen zu bewegen, und es fehlt ihnen an Einigkeit darüber, dass partizipative Entscheidungsfindung ein grundsätzliches Prinzip sein sollte und Schulungen, Führung und das richtige Mindset voraussetzt.
Zusammenfassung
Obwohl es an der entsprechenden Gesetzgebung und einem zentralen Anstoß für eine echte Implementierung von PEF in Dänemark fehlt, sind viele relevante Initiativen angelaufen.
The Danish health care system is universal and based on the principles of free and equal access to health care for all citizens. It is finanzed by general taxes. Denmark is divided into five regions and 98 municipalities. The five regions each cover several municipalities and organise health services for their citizens including the operational responsibility for hospitals, mental health care service and operating agreements with the general practice sector. The municipalities are responsible for prevention, rehabilitation, homecare and substance abuse treatment. The Danish Ministry of Health is a governmental ministry responsible for the overall health care policy, economic framework and legislation, including, for example, the National Danish Health Authority and the Danish Patient Safety Authority.
Shared decision making (SDM) is not systematically implemented in medical education. Medical students are taught at four universities in Denmark, of which the University of Southern Denmark is the only university to implement SDM teaching in their curriculum and to examine students in the subject. Moreover, in 2016 SDM was included in the legislation for a bachelor's degree in nursing.
Legislation and political climate
Patient rights towards SDM in law and legislation
The Danish Health Act 2005 states that patients have the right to receive information about their own health condition and about treatment options, including the risk of complications and side effects. Information must be more comprehensive when treatment involves higher risks of serious complications and side effects. In addition, patients have explicit rights to informed consent, also in case of minors and incapacitated adults.
In securing patients’ rights, Denmark thus has a prominent role with a health care system organized for the individual patient. The role is less prominent in regards to strengthening the involvement of patients in treatment decisions, i.e. ensuring that health care is developed and organized with the individual patient. A small step has been taken since a new version of the legislation for medical record-keeping for all health care professionals in Denmark was launched in 2021 [
]. One out of eleven areas necessary to record is: 'The patient’s description of his own situation and the reason for the contact as well as any wishes for treatment'. Documentation of SDM is not required by law, but to record patients’ wishes is mandatory. This could possibly clear the way for further political incentives.
Patient involvement in Danish health care policy
Over the last 10 years, patient involvement has been the subject of increasing attention in the Danish health care policy. Use of Patient Reported Outcomes (PROs) and Patient Decision Aids (PtDAs) is now an established part of the quality and improvement area in the Danish health care system. Although this does not mean that PRO and PtDAs are successfully implemented everywhere in the clinical care settings.
In 2016, the Danish Government and the Association of Danish Regions launched eight national quality indicators to monitor and support progress in the quality and improvement work in the Danish health care system with an update in 2021 [
]. One of the indicators derives from the yearly national patient experience survey and measures to which degree patients experience that they take part in decision making about their examinations and treatment.
The same year, the Danish Health Authority also allocated significant resources to support and initiate the work with patient involvement, e.g. SDM and PROs. Danish Health Authority granted about 5 million Euros in funding to 28 projects in Denmark to develop PtDAs which was a kick start of the development of PtDAs in Denmark. The five Danish regions also received lasting funds for competence development in and implementation of patient involvement.
These policy initiatives from 2016 express a paradigm shift in the national governance of the health care system, especially of benefit to the hospitals. It has helped to legitimate that cultural change and a focus on psychosocial elements are needed to obtain a better health care system. This shift includes an increasing interest in SDM as a mean to break down the needed cultural change into more concrete practice.
Furthermore, national evidence based guidelines are developed, funded, approved and hosted by the Danish Health Authority. Recently, some of these guidelines also include recommendations for SDM and the use of PtDAs [
]. Moreover, one of four benchmarks in the Danish Multidisciplinary Cancer Groups (DMCG) 2020–2022 strategy was on patient involvement and collaboration, where one of the objectives is that 50% of DMCGs have clinical guidelines with links to PtDAs [
Patient and public involvement in research (PPI) is a fairly new discipline in Denmark compared with the United Kingdom, Canada, the United States and Australia. In 2016, the Research Unit for User Perspectives at the University of Southern Denmark embarked on a knowledge-sharing exercise to map the extent of PPI across the country and at the same time share good practice and support its implementation [
Patienten som partner i dansk sundhedsforskning: Vidensdeling og kortlægning af patientinddragelse i forskning i Danmark [Patient as partner in healtrelated research in Denmark: Dissimination and mapping of patient involvement in research in Denmark].
]. Findings indicated that since 2014, PPI has become integral to health services research and implementation practices. In 2021, a national conference titled 'Patient and Public Involvement in Complex Intervention Research' provided a forum for training delivered by patient partners, researchers and practitioners on involving patient partners in complex intervention research, a forum to disseminate work-in-progress about patient involvement research and quality improvement and an inter-disciplinary network to share perspective about patient involvement intervention research [
]. Yearly, a PhD course is offered at Aarhus University to provide PhD students the relevant training to include patient partners in their research. Furthermore, it has become an increasing requirement in many grant applications that the applicant must account for patient or user involvement in the applied project including what efforts have been made to involve patients, relatives or other relevant players in the development and design of the project. Whether this criteria on patient involvement in the applied research project is sufficiently met is taken into account when applications are reviewed for funding.
Key initiatives on SDM
Center for Shared Decision Making (Region of Southern Denmark)
In 2014, Lillebaelt Hospital in Vejle established a Center for SDM which was initially established as a research based initiative with an aim to build a strong collaboration between clinical, academic and patient communities, embedded in hospital routines and working across the organization [
]. The center has now accumulated extensive experience and knowledge about SDM as well as developed, tested and evaluated PtDAs based on a developed generic template (BESLUTNINGSHJÆLPER™ - “The Decision Helper”). Also, the center has gained research-based evidence supporting that the developed PtDA’s do increase involvement of patients in decisions about their treatment, and the patients are among the most satisfied in the country, based on the yearly national patient satisfaction survey and results from research projects [
The impact of a patient decision aid on shared decision-making behaviour in oncology care and pulmonary medicine-A field study based on real-life observations.
]. In 2019, based on the positive experience at Lillebaelt Hospital, the Region of Southern Denmark decided to establish a regional Center for SDM to strengthen the work of implementing SDM in all hospitals across the region. The center was inaugurated in September 2019. The task of the regional center is to ensure knowledge gathering as well as building competencies and training in SDM across the region as well as supporting the local SDM implementation processes. During the first five years of the center's existence, the main focus has been on the field of cancer and PtDAs to constitute a role model for SDM. With a new program plan, the center is now disseminating the initial experience to all disease groups beyond cancer [
]. As part of this regional effort, 28 areas/departments in the Region of Southern Denmark are in the process of SDM implementation. The effort is based, among other things, on “Teach the Teachers” and currently 131 clinicians are trained as teachers who can teach their peers. These clinicians have taught 1064 clinicians in SDM. A specific SDM course has been developed for managers in which 165 managers have participated. The center has supported the development of 37 PtDA based on the “Decision Helper” template and 15 new ones are under development. In addition, two PRO measures have been developed about patient experienced SDM which have been implemented as part of the 11 survey questions that are sent out throughout the region each month.
Center for Patient Involvement (Capital Region)
Since 2022, SDM is a prioritized focus area across the six hospitals in the Capital Region - and is seen as a method to increase the level of patient satisfaction in the region. Before 2022, especially clinical cancer departments worked locally with SDM.
As part of a first stage, the Center for Patient Involvement (CPI) supports four pioneer clinical departments in developing and implementing regional PtDAs in 2022. The PtDAs are based on the “Decision Helper” template. When the four PtDAs are successfully developed and implemented they have to be adapted and implemented in similar departments at other hospitals in the region. In choosing which departments and group of patients should be enrolled in this effort, CPI emphasized the presence of a clear treatment choice, a high level of maturity regarding patient involvement in the department and leaders that demonstrate the will to change the culture into a patient centered culture. To support the future spread of the PtDAs, the relevant Health Professionals Councils are engaged as their members are clinical opinion leaders and work across different hospitals in the region.
CPI is cooperating with the Center for Shared Decision Making from 2022–2023 to build capacity and competencies to be able to successfully transform the culture at the hospitals into a patient-centered culture where SDM is integrated into clinical practice.
In 2023, the second stage of the journey towards systematic SDM will be commenced by choosing new patient groups for which it is relevant to develop and implement PtDAs – and further supporting the spread of the first four regional PtDAs.
Research Center for Patient Involvement (Central Denmark Region)
The Research Center for Patient Involvement (ResCenPI) launched in January 2020 is building on outputs from a five-year research program of patient and family experiences of SDM in health care [
]. The “User-involving Hospital” program was initiated in 2014 inspired by the 'Making Good Decisions in Collaboration (MAGIC)' UK project. Patients, families and clinicians were involved systematically in the design and appraisal of services to ensure that health care delivery was of relevance to end users. In total, 18 departments were included in this project and eight SDM interventions were developed, evaluated, implemented and are integrated within practice [
]. It provides a regional hub across health, university and patient organisations for 70+ members investigating SDM and other patient involvement interventions.
ResCenPI’s focus is research to design, implement and evaluate complex interventions improving people's engagement in health care relevant to their daily lives across all health contexts. ResCenPI provides guidance for researchers to innovate and change involvement practices within health care. Furthermore, it finds evidence for the design, use and evaluation of interventions helping people make informed health care decisions individually and together (MIND-IT) [
]. ResCenPI interventions draw on SDM, PtDAs, PROs and supported self-management conceptual frameworks. Recently, ResCenPI’s postdoctororal researcher carried out a rapid review of international measures translated into Danish assessing patient involvement interventions. The review identified 11 measurements for SDM used in Danish health care settings [
]. When setting up ResCenPI, patient partners were invited to inform its vision and strategy. A patient partners researcher was employed to investigate the needs of members to support PPI. Outputs include resources and training for researchers and practitioners to involve patient partners in research, and a research stream investigating the effective inclusion of patient partners within research governance [
]. ResCenPI is represented on health committees planning how best to improve SDM practices, clinical standards and guidelines, and support staff and patients when implementing SDM interventions.
Patient decision aids
Acknowledging that high-quality PtDAs are strong facilitators of SDM, the Center for Shared Decision Making at Lillebaelt Hospital has developed, scientifically tested and implemented the above-mentioned “Decision Helper” template. This template was developed according to IPDAS criteria and provides healthcare professionals with access to an online PtDA building platform from where new PtDAs (“Decision Helpers”) can be developed. By the means of log-in, they are offered a step-by-step guidance to build and print individual PtDAs, making it intuitive and easy to work with and providing health care professionals the opportunity to build and develop PtDAs tailored to their specific needs and clinical situations. As part of a self-quality assurance, health care professionals who have developed the specific “Decision Helper” are asked to rate it according to the IPDAS criteria. These mandatory ratings are shared on the center’s website together with the “Decision Helper” (Fig 1).
Fig 1Example of IPDAS criteria fulfilled in the “Decision Helper”: “The possibility of prophylactic radiotherapy after breast-conserving surgery for early-stage breast cancer”. This summary is a mandatory self-report from the clinician who developed the PtDA.
Through a process in the Danish Regions’ Board of Innovations, the “Decision Helper” template was chosen as a solution that should be made available to all health care professionals in Danish hospitals, making access for high-quality PtDAs possible all across Denmark. The generic “Decision Helper” template platform is now accessible to all five regions in Denmark and is also available in English. Available “Decision Helpers” and “Decision Helpers” under development can be seen at www.cffb.dk [
Across Denmark, other PtDAs have been developed. For example, a PtDA regarding outpatient parenteral antibiotics, a PtDA on dialysis choice and a PtDA for women making breast cancer treatment decisions. For people making decisions about screening for colorectal cancer, a national PtDA has been developed within the Central Denmark Region. Several PtDAs within the area of birth and gynecological diseases have been developed and implemented in the Capital Region and in the Region of Southern Denmark. Several of these have been implemented across hospitals and regions [
Effectiveness of a decision aid for colorectal cancer screening on components of informed choice according to educational attainment: A randomised controlled trial.
The movement from project-related initiatives to real-life implementation efforts puts a spotlight on the understandings, and especially misunderstandings, about the definition of SDM and the purpose of SDM. In Denmark, there is no clear definition of SDM in legal guidelines or directories, nor is there an overall opinion among politicians and key-opinion leaders, of where and why SDM should be practiced. Some see it as an opportunity to decrease expenses in the health care system, others misunderstand the purpose of SDM and think patients are left alone with the responsibility of the decision itself. This leads to a lack of convincing arguments from authorities of implementing SDM into clinical practice, and the implementation is often initiated by pioneers at the hospitals or among clinicians.
Scaling up across regions
As described, the overall operations of Danish hospitals are managed by the five regions, with “Danish Regions” as the unifying part. There is a wish to share strong initiatives, learn from each other across regions and ensure the spread of relevant initiatives. This is exemplified by the decision to spread the PtDA template “The Decision Helper” from the Region of Southern Denmark to the other Danish regions. Nevertheless, the good intentions of making an easily accessible template for developing PtDAs (the “Decision Helper” template) available for all health care professionals across Denmark is like many other initiatives challenged by silo-thinking, opaque pathways, self-management in the regions, and a high degree of focus on own and other relevant initiatives. The “Decision Helper“ platform has now been opened up in all five regions so that all clinicians can use the PtDA template to build and develop their own PtDAs. However, there is at present no available systematic offer to support the clinicians in their development or implementation of these.
As noted above, other PtDAs have also been successful with national dissemination and a few PtDAs are used at all hospitals in Denmark. For spreading these a special effort has been done to ensure the ownership from the clinicians. Some of the PtDAs at national level have only been possible to implement across the country after a process of adaptation and shared ownership through e.g. The Danish Breast Cancer Cooperation Group.
Mind the gaps
The lack of definition and arguments from authorities of implementing SDM influences several elements, including the incentive to incorporate SDM into clinical practice guidelines. This inclusion depends too much on the medical specialists working with clinical guidelines and is therefore influenced by the medical specialists’ personal opinion of SDM. With an overall definition and a clear request from authorities that SDM is included in clinical guidelines, the gap would be smaller and it would move SDM in Denmark forward. This would also make it possible to create a link between PtDAs and clinical guidelines enabling more patients to experience the benefits of the use of a PtDA, and the health care professionals would be guided and helped in how to practice SDM with their patients.
At the same time, it is also important that politicians, leaders, clinicians and key-opinion leaders move toward an understanding of the fact that PtDAs cannot stand alone when implementing SDM. There is still some way to go before the SDM paradigm is naturally accepted as something that requires both knowledge, skills, leadership, the right mindset and culture and good clinical workflows. And since SDM is for all patients, and not just for the few, it is essential to realize that SDM influences patients’ overall experience of the Danish health care system, which is an argument for the implementation itself. A few key-opinion leaders have made this realization – they need back-up to be able to move SDM even more forward.
Opportunities
Denmark has a long legal tradition for ensuring patients’ rights, yet the actual development and spread of SDM are still at an early stage [
]. In other European countries, such as Germany and the Netherlands, legislative initiatives have enabled some progress, but still implementation is patchy [
]. It is evident that although the legislative climate may be positive for SDM, the political climate will be the game changer that propels the implementation of SDM in respect of cultural change and further national implementation strategies.
The following are recommendations of and perspectives on the future implementation of SDM in the Danish health care system:
-
SDM should be incorporated in the Danish health legislation.
-
A national, common definition of SDM should be adopted and communicated widely across the health care sector.
-
Official designation of shared decision making as a clear and important healthcare task (and prioritization of this) from national healthcare authorities is required to implement SDM and patient involvement in national clinical guidelines.
-
The Danish Health Authority must move to the next level in ensuring progress in patient involvement, e.g. by necessitating patient involvement and SDM in plans and guidelines for different areas and treatment.
-
SDM should be a mandatory part of curriculums in all health educations.
-
All quality approved PtDAs should be made publically available.
-
A national effort is required to implement SDM based on evidence based research and driven by improvement methodology to obtain sustainable change.
-
There is a need for a strengthened focus on the leaders’ role in implementing SDM all the way through the management chain. This includes a higher knowledge level of what SDM is and what it takes to implement SDM in clinical context.
-
Ressources for implementation in the health care sector needs to be increased to ensure sustainable implementation of SDM.
-
Existing targets for a patient involving culture must be used actively by including patients in the dialogue with leaders in the health care sector. We also need to oblige leaders in supporting a patient involving culture, e.g. by implementing SDM.
Conclusions
Shared Decision Making in Denmark is in good progress. Many both relevant and good SDM initiatives have been launched in several of the country's five regions. Some are more research-based while others are centered around implementing and disseminating SDM skills to healthcare professionals. In theory, SDM has good conditions in Denmark seen in the light of a relatively uniform health care system with equal services for all residents regardless of education, age and economic situation. On the other hand, SDM is also challenged by the lack of legislation and a central push for real SDM implementation in Denmark. A persistent effort and the patience that cultural changes require, are needed for more patients in Denmark to become adequately involved in decisions about their screening, diagnostics, care and treatment.
Conflict of interest
All authors declare that there is no conflict of interest.
CRediT author statement
KDS, KO: Design and planning. All authors: Writing of manuscript, Approval of the final version.
Patienten som partner i dansk sundhedsforskning: Vidensdeling og kortlægning af patientinddragelse i forskning i Danmark [Patient as partner in healtrelated research in Denmark: Dissimination and mapping of patient involvement in research in Denmark].
The impact of a patient decision aid on shared decision-making behaviour in oncology care and pulmonary medicine-A field study based on real-life observations.
Effectiveness of a decision aid for colorectal cancer screening on components of informed choice according to educational attainment: A randomised controlled trial.
00055-1&id=gr1.jpg){kind=link}