Shared decision making in the Netherlands, is the time ripe for nationwide, structural implementation?

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1 Available online at Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) xxx (2011) xxx xxx Schwerpunkt Shared decision making in the Netherlands, is the time ripe for nationwide, structural implementation? Trudy van der Weijden 1,, Haske van Veenendaal 2, Ton Drenthen 3, Martine Versluijs 4, Peep Stalmeier 5, Marije Koelewijn-van Loon 1, Anne Stiggelbout 6, Danielle Timmermans 7 1 Dept General Practice\ CAPHRI School for Public Health and Primary Care, Maastricht University, the Netherlands 2 Dutch Institute for Healthcare Improvement CBO, Utrecht, the Netherlands 3 Dutch College of General Practitioners, Utrecht, the Netherlands 4 Federation of Patients and Consumer Organisations in the Netherlands (NPCF), Utrecht, the Netherlands 5 Dept Epidemiology, Biostatistics and HTA, Radboud University Medical Centre, Nijmegen, the Netherlands 6 Dept Medical Decision Making, Leiden University Medical Centre, Leiden, the Netherlands 7 Department of Public and Occupational Health, EMGO institute, VU University Medical Center, Amsterdam, the Netherlands Summary What about policy regarding SDM? The Dutch health care system has been reformed in 2006 to make it more patient-oriented and demand-driven. We shortly describe four strategies of this health care reform. Although research projects are now fully spread over the country, a coordinated research agenda on SDM is lacking. What about tools decision support for patients? The Dutch governmental healthcare internet portal for patients hosts 16 patient decision aids. What about professional interest and implementation? There is quite a strong patient participation movement in the Netherlands, on macro and meso level. Limited effort, related to the local research projects has been put into training professionals in SDM skills. What does the future look like? We need concerted action on the level of educating health care professionals, empowering patients, making patient decision aids easily accessible, supporting the professionals in this new task, and measuring the process of SDM in performance indicators used in quality assurance. The Dutch Platform for SDM that will be launched in Maastricht in June 2011 is therefore a timely and relevant initiative. Key words: patient participation, patient information, shared decision making, health policy, patient preferences, quality assurance in healthcare (As supplied by publisher) Corresponding author. Trudy van der Weijden, MD, PhD, Dept General Practice\ CAPHRI School for Public Health and Primary Care, Maastricht University, the Netherlands. (T. van der Weijden). Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) doi: /j.zefq

2 Partizipative Entscheidungsfindung in den Niederlanden: Ist die Zeit reif für eine landesweite strukturelle Implementierung? Zusammenfassung Wie steht es mit gesetzlichen Regelungen zur PEF? Das niederländische Gesundheitssystem wurde 2006 zugunsten einer stärkeren Patienten- und Bedarfsorientierung reformiert. In diesem Beitrag beschreiben wir kurz vier Strategien dieser Gesundheitsreform. Obwohl Forschungsprojekte sich mittlerweile über das ganze Land erstrecken, mangelt es an einer koordinierten Forschungsagenda zum Thema PEF. Wie steht es mit PEF-Instrumenten Entscheidungshilfen für Patienten? Das staatliche niederländische Internet-Gesundheitsportal für Patienten beinhaltet 16 Entscheidungshilfen für Patienten. Wie steht es mit dem Interesse der Profession und der Implementierung? In den Niederlanden gibt es sowohl auf der Makro- als auch der Mesoebene eine recht starke Bewegung zur Patientenbeteiligung im Gesundheitswesen. Im Vergleich zu lokalen Forschungsprojekten sind im Hinblick auf die Weiterbildung von Fachkräften in PEF-Fertigkeiten dagegen nur begrenzte Anstrengungen unternommen worden. Wie sieht die Zukunft aus? Es bedarf einer konzertierten Aktion im Hinblick auf die Ausbildung der Fachkräfte im Gesundheitswesen, das Empowerment von Patienten, eine leichte Zugänglichkeit von Entscheidungshilfen für Patienten, die Unterstützung der Fachkräfte bei dieser neuen Aufgabe und die Erfassung des PEF-Prozesses mithilfe von Leistungsindikatoren, wie sie in der Qualitätssicherung zur Anwendung kommen. Die niederländische PEF-Plattform, die im Juni 2011 in Maastricht anlaufen soll, ist hierfür eine zeitgemäße und relevante Initiative. Schlüsselwörter: Patientenbeteiligung, Patientenaufklärung, Partizipative Entscheidungsfindung, Gesundheitspolitik, Patientenpräferenzen, Qualitätssicherung im Gesundheitswesen (Wie vom Gastherausgeber eingereicht) Introduction According to a typical Dutch saying Geen woorden maar daden [no words but action] we should stop talking about shared decision making and start to act upon it. Are we in the Netherlands ready for such translation from theory to practice? And if so, what is needed for the implementation of SDM? Obtaining the commitment of the health care professionals seems to be one of the main challenges for active patient involvement in decision making. The challenge is to enrich the professionals paradigm with other than paternalistic models for medical decision-making. First, they should be made aware of the phenomenon of SDM, and fully understand what it implies, before they can accept it as a valuable approach and get intrinsically motivated. Once they are in this stage of change, they should know how to do it, gain specific skills and competencies for this task, and be optimally facilitated and supported, to take the step to real behaviour change and maintain this new behaviour according to the SDM principles as routine behaviour. Clearly, to reach such a paradigm shift is quite a challenge for which complex multifaceted strategies are needed that address broad ranges of barriers at the levels of health professionals, the health care system, and last but not least - the patients. Applying the principles of SDM seems to be difficult for health care professionals. Data on the diffusion of shared decision-making within Dutch health care are scarce. But the general picture is that, although health care professionals might think they perform according to the principles of SDM, actual performance scores are low [1]. Many barriers have been identified from the perspectives of professionals, patients and the organization and prevailing culture of health care. We have learned from negative trials that pushing clinicians to apply SDM will not simply lead to uptake of SDM behaviour. Should we therefore put our efforts on empowering patients? The theme of the International Shared Decision Making (ISDM) 2011 conference Implementation of SDM, patient push or physician s pull is deliberately put in a simplified and dichotomous way, but those who have tried to implement SDM know that the answer is that we need both. The goal of this paper is to describe some current developments in the Dutch health care system and research on SDM. The paper is structured along the following themes: 1) some background information on the health care system, 2) research and research agenda on SDM, 3) milestones to get SDM implemented into the national health care system. In the Netherlands we use quite direct translations from the English language discourse on shared decision making. We use gezamenlijke besluitvorming for shared decision making. We use keuzehulp for decision aid, which would directly translate into choice aid. Background info on the health care system. Does it ensure a good climate for the implementation of SDM? The Dutch government aims to make the Dutch health care system more patient-oriented and demand-driven. We shortly describe four strategies used on macro and meso level to reach this goal. 2 Z. Evid. Fortbild. Qual. Gesundh. wesen xxx (2011) xxx xxx

3 Firstly, as a consequence of the new Health Insurance Act that was launched in 2006, all residents of the Netherlands are obliged to choose a health insurance company, and health insurers cover a standardised package of healthcare. Health insurance companies in their turn are obliged to accept every resident in their area of activity. Regulated competition among health care providers and among health care insurers was introduced. A conscious and rational choice of providers and insurers by patients is a crucial element in such a system. The Dutch government tries to enable consumers to choose rationally between providers and between health care insurers. The underlying assumption is that patients and consumers will actively choose the health care providers that are known to provide high quality of care. A recent evaluation of the health care reform showed that the number of consumers actively switching between health care insurers stabilised on 5% of the consumers per year, after a small increase just after health care reform [2]. Such increase was not seen in use of comparative consumer information with the aim to deliberately choose for a health care provider. Consumers rely, for the time being, on personal experiences as a valuable information source, and seem to support the model of sharing the decision on where to seek specialized care with their general practitioner, the gatekeeper for specialized care [3]. Secondly, decision making on the content of the care is regulated by the Wet op de Geneeskundige Behandelingsovereenkomst (Law on the Medical Treatment Agreement), that was launched in This law is constituted of several obligations and rights for professionals and patients, such as the professionals obligation to discuss the diagnostic and treatment options and inform the patient on consequences and risks of each option. Despite the fact that this law seems to reflect the ethical principle of SDM, it does not generate full-blown SDM performance by the Dutch health care providers, who seem to stick to the prevailing informed consent procedures. So, it was interpreted in the spirit of the informed patient model, and did not raise any call for or awareness of the SDM model or patient decision aids. Moreover, evaluation showed that especially in the area of risk communication and the communication of harms and benefits of medical interventions, health professionals are not adhering to the law [4]. Later this year a new law will be launched. The Law on the Medical Treatment Agreement will be integrated in a new law on Client rights in Health Care (WCZ) that will bundle the existing laws in which patient rights are described. Thirdly, the government initiated a systematic investment of patient experiences with healthcare on a collective level, by founding the Dutch Centre for Consumer Experience in Health Care in December This independent foundation is governed by a board representing patient/consumer organisations, health care insurers, and health care providers. The aim is to implement valid and reliable measurements and comparisons of consumer experiences in health care. This standard is called the Consumer Quality Index that is based on American CAHPS questionnaires. The Consumer Assessment of Healthcare Providers and Systems (CAHPS) program develops standardized surveys of patients experiences with ambulatory and facility-level care. Health care organizations, public and private purchasers, consumers, and researchers use Consumer Quality Index results to assess the patient-centeredness of care, and improve quality of care. Twenty Consumer Quality Indexes are currently available. This might induce attention for patient preferences and therefore for SDM. Fourthly, there is quite a strong patient participation movement in the Netherlands, on macro and meso level. Patients or patient representatives are more and more involved in setting national research agendas [5], developing clinical practice guidelines [6], or in coverage decisions by the Dutch Council of Health insurances. It is not clear yet what this means for the climate for SDM, but some innovative approaches seem to have emerged from this. One example in the area of preventive medicine is a guideline for periodic cardiovascular health checks launched by the Dutch College of General Practitioners. This guideline tries to find a patient-centred answer on the patient-driven demand for health checks. The guideline is first of all built on principles of risk communication and SDM, and less so on the principles of evidence-based medicine. Research and research agenda on SDM Although the Netherlands Organization for Health Research and Development (ZonMW) has financed one single project to support the development of patient decision aids, it did not set any specific budget in their research programming on SDM. Nevertheless, within the running research programs on effective and efficient care, disease management, or guideline implementation and prevention, patient participation on collective or individual decision making in health care is increasingly viewed as important. An example is a 4 year program carried out by the Federation of Patients and Consumer Organisations in the Netherlands (NPCF) in close collaboration with the Dutch Institute for Healthcare Improvement CBO aiming at promoting and facilitating self-management by (chronic) patients. The downside is that finances for this field of research are relatively small compared to other medical and health care themes, and the Dutch government is cutting down on the research budgets. Another problem is that budgets regularly have a specific focus on either the patient or the professional, rather than both sides of the coin. Non-governmental sources for research grants for SDM are funds from disease-specific associations such as for cancer, rheumatoid arthritis, cardiovascular disease, or diabetes. The Dutch Diabetes Federation has a specific research program called Stem van de patient [the patient s voice] for research on self-management, the role of patients with experiential knowledge in empowering other patients, and SDM. Table 1 shows an overview of Dutch research projects on SDM. Compared to Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) xxx (2011) xxx xxx 3

4 Table 1. Examples of projects executed by the Dutch researchers in this field. City Theme: decision making on: Descriptive; observational studies Leiden - Rectal cancer; preoperative radiotherapy / permanent stoma or low anterior resection / adjuvant chemotherapy [7] - Breast cancer risk; inconclusive DNA-test - Asymptomatic abdominal aneurysm; surgery [8] Amsterdam - Prenatal screening on congenital defects - Breast cancer risk; the genetic counsellor s role - Adjuvant therapy for breast, pancreatic and oesophagus cancer - Asymptomatic abdominal aneurysm; surgery [9] Utrecht - SDM in genetic counselling - SDM related to treatment adherence - SDM in general practice for patients with low back pain - Depression in people with ethnic minority Nijmegen - Prostate cancer treatment decisions [10] - Metastatic breast or colon cancer; palliative chemotherapy or best supportive care - Communicating familial colorectal cancer risk [11] - Genetic breast cancer: prophylactic mastectomy vs screening - Fertility; replacement of 1 or 2 embryos in IVF [12] Groningen - Treatment of cardiovascular risk in diabetes Rotterdam - Prevention; participation in population screening on cancer (cervical, lung, colon, prostate) Maastricht - Cardiovascular risk management [13] - Glucose and cholesterol self test by consumers - Follow-up strategy after breast cancer treatment Twente decision aid developed or studied - Drug treatment for osteoporosis - Adjuvant therapy in gynaecological cancers - Drug treatment in rheumatoid arthritis - Treatment of acquired ankle-foot impairment in stroke - Treatment of arm-hand function in cervical spinal cord injury Evaluation of SDM strategy in health care 4 Z. Evid. Fortbild. Qual. Gesundh. wesen xxx (2011) xxx xxx

5 the overview as it was published in 2007 [14], we can conclude that research projects on SDM are now fully spread over the country, which is good. The studies are rather small initiatives stemming from various sources for grants. We lack a coordinated agenda on SDM research in the Netherlands. Milestones to get SDM implemented into the national health care system There is some awareness for SDM in the Netherlands, e.g. reflected by a recent paper in the Dutch medical journal [15]. Hopefully the awareness will be stimulated by hosting the 6 th ISDM 2011 conference in the Netherlands this year. The theme of the conference is on closing the gap between theory and practice. Patients or patient representatives might help us in thinking about how to translate SDM theory into practice. The ISDM conference outcomes will have an impact on the way we communicate with patients, so they need to be involved to agree, to improve and to work together on the model of SDM. Awareness of patient organisations of ISDM 2011 will facilitate successful implementation of SDM. Key patients from the patient and public involvement movement are advising us on how to best organise patient involvement at the conference. Four patient representatives will be invited to the conference, one of which will give a key note. Just after the closing of the 6 th International Conference of SDM the Dutch Platform of SDM will be launched in Maastricht, in the format of an extra plenary session, financed by one of the largest Dutch health care insurers. This Dutch Platform brings the relevant stakeholders together to enhance the quality and effectiveness of SDM within Dutch healthcare. It is a national informal and not-for-profit association of organizations and individual members to promote the SDM through national collaboration. The platform s specific objectives are: Table 2. Overview of patient decision aids that are available to the public on the governmental patient portal Kiesbeter.nl [chose better.nl]. Title of patient decision aid Pediatrics Drug treatment of children with ADHD Surgical treatment of tonsillitis Treatment of chronic otitis media in children Mental health Treatment of anxiety disorders Treatment of depression Treatment of depression in people with Turkish or Moroccan background Cardiovascular risk Cardiovascular risk management (primary prevention) Cardiovascular risk management in persons with diabetes Cardiovascular risk management in persons with cardiovascular disease Other treatments Surgical treatment of breast cancer Treatment of hernia nucleus pulposi Treatment of menopausal complaints Treatment of spontaneous pneumothorax Prevention and Screening Contraception Screening for prostate cancer Prenatal screening Down Syndrome to share experiences and evidence, and patient decision aids; foster national research collaboration on evaluation of SDM activities and application of rigorous methodologies; propose methods and standards for SDM development, implementation, and evaluation; and organize a national conference on SDM each year. Another milestone is the fact that the Dutch governmental healthcare internet portal hosts 16 patient decision aids, see Table 2. The dissemination of independent decision aids is important, and they may serve as seeds for other parties such as health insurance companies to make decision aids available to the public. Companies with commercial interests in patient choices will otherwise naturally try to invade this patient information market. The patient decision aids were developed with low-budgets and under the pressure of short timeframes. The decision aids will probably score fairly on IPDAS criteria. They are rather well developed on providing information about options and presenting probabilities, but less so on eliciting values and issues such as guiding or coaching. Interestingly, the evidence and options for these patient decision aids were directly distracted from clinical practice guidelines that had just been launched [16]. They were developed by independent committees that were closely linked to the clinical practice guideline committees, with representatives of patient organisations, guideline developers and the scientific organisations of general practitioners and medical specialists. No connection whatsoever has been made between the clinical practice guidelines and the patient decisions aids, they seem to stem from different worlds. There is a gap between the world of decision support for professionals (Guidelines International Network and the world of decision support for patients (International Patient Decision Aids Standards collaboration ipdas.ohri.ca). Accessibility on the governmental patient portal is another problem, they are just difficult to find. The health care insurers show increasing interest in making these decision aids easily accessible, and one of them already fully implemented one of these decision aids (the prenatal screening decision aid) on their own website, to increase accessibility. Conclusion Are we in the Netherlands ready for the translation from talking and theorising on SDM to acting upon it in practice? Maybe. Although we have shown some progress we are not ready yet for full blown implementation. To date, most of the effort has gone into development of patient decision aids and making these available for the public. And within this activity, most effort has been put in developing decision aids for supporting patients in choosing a health care provider, and much Z. Evid. Fortbild. Qual. Gesundh. wesen (ZEFQ) xxx (2011) xxx xxx 5

6 less so for decisions on the content of care. Limited effort, related to the local research projects (Table 1) has been put into training professionals in SDM skills. Nevertheless, the climate for SDM in the Netherlands is quite good. Although SDM is getting into the heads of more and more people, the challenge is to get it into their hearts. We need concerted action on the level of educating health care professionals, empowering patients, making high-quality patient decision aids easily accessible for professionals and patients, supporting the professionals in this new task, and measuring the process of SDM in performance indicators used in quality assurance. The Dutch Platform for SDM is therefore a timely and relevant initiative. Acknowledgements On behalf of the current members of the Dutch Platform of Shared Decision Making in formation, in alphabetical order: Jozien Bensing, Danielle de Meije, Ton Drenthen, Yvonne Heerkens, Janneke Kaper, Marije Koelewijn-van Loon, Hans Ossebaard, Wilma Otten, Ariette Sanders-van Lennep, Peep Stalmeier, Anne Stiggelbout, Danielle Timmermans, Inge van den Broek, Trudy van der Weijden, Haske van Veenendaal, Martine Versluijs. References [1] Van den Brink-Muinen A, van Dulmen AM, Schellevis FG, Bensing JM. Tweede nationale studie naar ziekten en verrichtingen in de huisartspraktijk. Oog voor communicatie: huisarts-patient communicatie in Nederland. [Second national Survey of diseases and performance in general practice. View on communication: general practitioner patient communication in the Netherlands.]: NIVEL Utrecht; the Netherlands, [2] De Jong JD, Van den Brink-Muinen A, Groenewegen PP. The Dutch health insurance reform: switching between insurers, a comparison between the general population and the chronically ill and disabled. BMC Health Services Research 2008;8:58. [3] Moser A, Korstjens I, van der Weijden T, Tange H. Themes affecting health-care consumers choice of a hospital for elective surgery when receiving web-based comparative consumer information. Pat Educ Couns 2010;78: [4] Dute JCJ, Gevers JKM, Hubben JH, Legemaate J, Roscam-Abbing HDC, Sluijters B, et al., De evaluatie van de WGBO [The evaluation of the Law on the Medical Treatment Agreement]. ZonMW, Den Haag, the Netherlands, [5] Abma TA, Broerse JEW. Patient participation as dialogue: setting research agendas. Health Expectations 2010;13: [6] Boivin A, Currie K, Fervers B, Gracia J, James M, Marshall C, et al., on behalf of GIN Public [the Guideline International Network Patient and Public Involvement Working Group]. Patient and public involvement in guidelines: international experiences and future perspectives. Qual Saf Health Care 2010;19:e22. [7] Stiggelbout AM, Jansen SJT, Otten W, Baas-Thijssen MCM, Van Slooten H, Van de Velde CJH. How important is the opinion of significant others to cancer patients adjuvant chemotherapy decision-making? Support Care Cancer 2007;15: [8] Stiggelbout AM, Molewijk AC, Otten W, Van Bockel JH, Bruijninckx CMA, Van der Salm I, et al. The impact of individualized evidence-based decision support on aneurysm patients decision-making, ideals of autonomy, and quality of life. Med Decis Making 2008;28: [9] Knops AM, Ubbink DT, Legemate DA, de Haes JC, Goossens A. Information communicated with patients in decision making about their abdominal aortic aneurysm. Eur J Vasc Endovasc Surg 2010;39: [10] van Tol-Geerdink JJ, Leer JW, van Lin ENJTh, Schimmel EC, Huizenga H, van Daal WAJ, et al. Offering a treatment choice in the irradiation of prostate cancer leads to better informed and more active patients, without harm to well-being. International Journal of Radiation Oncology, Biology, Physics 2008;70: [11] Dekker N, Hermens RPGM, Elwyn G, van der Weijden T, Nagengast FM, van Duijvendijk P, et al. Improving calculation, interpretation and communication of familial colorectal cancer risk: a randomized controlled trial. Implementation Science 2010;5:6. [12] van Peperstraten AM, Nelen LDM, Grol RPTM, Zielhuis G, Adang A, Stalmeier PFM, et al. Patient empowerment for prevention of twins after in vitro fertilisation: randomized controlled trial. BMJ 2010;340:c2501, doi: /bmj.c2501. [13] Koelewijn van Loon MS, van der Weijden T, van Steenkiste B, Ronda G, Winkens B, Severens JL, et al. Involving patients in cardiovascular risk management using nurse-led clinics: a cluster-randomised controlled trial in primary care. Can Med Ass J 2009;181:E [14] Van der Weijden T, van Veenendaal H, Timmermans DRM. Shared decision making in the Netherlands. Zeitschrift für Ärztliche Fortbildung und Qualitätssicherung 2007;101: [15] Ubbink DTh, Knops AM, Legemate DA, Bossuyt PMM, de Haes JCJM, Goossens A. Stand van zaken. Kiezen tussen verschillende behandelopties; hoe informeer ik mijn patiënt? [State of the art. Choosing between different treatment options, how to inform my patient?]. Ned Tijdschr Geneesk 2009;153:B344. [16] Raats CJ, van Veenendaal H, Versluijs MM, Burgers JS. A generic tool for development of decision aids based on clinical practice guidelines. Patient Educ Couns 2008;73: Z. Evid. Fortbild. Qual. Gesundh. wesen xxx (2011) xxx xxx

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