Health Policy 120 (2016) Contents lists available at ScienceDirect. Health Policy

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1 Health Policy 120 (2016) Contents lists available at ScienceDirect Health Policy j ourna l ho me pa g e: Health Reform Monitor The 2015 National Cancer Program in Sweden: Introducing standardized care pathways in a decentralized system Jens Wilkens a,b,, Hans Thulesius b, Ingrid Schmidt a, Christina Carlsson a,c a Department of Evaluation and Analysis, Systems Analysis Unit, The National Board of Health and Welfare, Sweden b Department of Clinical Sciences Malmö, Family Medicine, Lund University, Sweden c Institute of Clinical Sciences, Division of Oncology and Pathology, Lund University, Lund, Sweden a r t i c l e i n f o Article history: Received 14 April 2016 Received in revised form 29 August 2016 Accepted 14 September 2016 Keywords: Health care reform Government programs Benchmarking Continuity of patient care Standardized Clinical pathways Sweden Waiting list a b s t r a c t Starting in 2015, the Swedish government has initiated a national reform to standardize cancer patient pathways and thereby eventually speed up treatment of cancer. Cancer care in Sweden is characterized by high survival rates and a generally high quality albeit long waiting times. The objective with the new national program to standardize cancer care pathways is to reduce these waiting times, increase patient satisfaction with cancer care and reduce regional inequalities. A new time-point for measuring the start of a care process is introduced called well-founded suspicion, which is individually designed for each cancer diagnosis. While medical guidelines are well established earlier, the standardisation is achieved by defining time boundaries for each step in the process. The cancer reform program is a collaborative effort initiated and incentivized by the central government while multi-professional groups develop the time-bound standardized care pathways, which the regional authorities are responsible for implementing. The broad stakeholder engagement and time-bound guidelines are interesting approaches to study for other countries that need to streamline care processes The Author(s). Published by Elsevier Ireland Ltd. This is an open access article under the CC BY-NC-ND license ( 1. Introduction Swedish health care is characterized by relatively satisfying overall health outcomes, especially in specialized care. However, long waiting times is a major concern and an area of underperformance. Waiting times in cancer care is politically identified as an arena with unacceptably long Open Access for this article is made possible by a collaboration between Health Policy and The European Observatory on Health Systems and Policies. Corresponding author at: Department of Clinical Sciences Malmö, Family Medicine, Lund University, Sweden. addresses: jens.wilkens@med.lu.se, j wilkens@hotmail.com (J. Wilkens), hans.thulesius@med.lu.se (H. Thulesius), ingrid.schmidt@socialstyrelsen.se (I. Schmidt), christina.carlsson@socialstyrelsen.se (C. Carlsson). waiting times. Therefore, a number of national policies have over the years been introduced to address this challenge [1]. The responsibility for health care in Sweden is shared by the central government, 21 county councils and 290 municipalities. Traditionally the government s role has been legislation, norms setting, evaluation and audit. However, in recent years agreements between the central government and the Swedish Association of Local Authorities and Regions (SALAR) have become common [2]. These agreements and associated dialogues represent a form of national soft-governing in Swedish health policy. Swedish cancer care can be described as a divide between two sets of outcomes. Survival rates are among the highest in the world and patient trust in health care quality is generally satisfying [3,4]. Yet, long waiting times / 2016 The Author(s). Published by Elsevier Ireland Ltd. This is an open access article under the CC BY-NC-ND license ( org/licenses/by-nc-nd/4.0/).

2 J. Wilkens et al. / Health Policy 120 (2016) remain despite a number of policy measures over the years [5,6]. Lack of information and care coordination varies substantially across diagnoses and geographical regions and threaten future outcomes. Thus, there is a persistent discontent with the lack of accessibility and responsiveness in large parts of Swedish health care. In 2009 the Swedish government launched a national cancer strategy [7] and later (2010) founded six regional cancer centers working across traditional organisational boundaries. These cancer centers with mainly central government funding today constitute six well recognized knowledge hubs for cancer. The centers have developed supportive activities in collaboration with health care providers and the regional health administrations. Because they are not responsible for any funding or provision of services, they cannot directly influence care. Much of the work and development since the cancer strategy program [7] was launched in 2009 is seen as relevant and valuable. Yet, the main objective of shorter waiting times in cancer care has not been met [5,6]. Parallel to the Swedish cancer strategy implementation, Denmark embarked on a different program by developing integrated cancer care pathways (in Danish; pakkeforløb) that go beyond traditional clinical guidelines of what should be done for a specific diagnosis by establishing how many days each action needs in the diagnostic and treatment process of a cancer patient [8]. There were distinctively different starting points for reform to improve cancer care in Denmark and Sweden. Unlike Sweden, the main problem in Denmark was the comparatively low cancer survival rates and the perception that medical treatment quality was unsatisfactory. The low survival rates were thus considered not caused solely by life-style and socio-economic factors, but also by a compromised quality of care. The Danish integrated cancer care pathways are considered a success: waiting times has shortened for the specific part of the care pathway which the reform targeted and collaboration between levels of care has improved [3,4]. Satisfaction with care quality has also increased among both patients and staff [8 12]. The Danish experience influenced the Swedish central government to launch Standardized Care Pathways (in Swedish; Standardiserade vårdförlopp) in 2015, based on the same principles as the Danish reform [8]. The same year Norway started a similar program inspired and guided by Denmark with similar objectives, although at a higher implementation speed than planned in Sweden. 2. Design of the standardized cancer care pathways For each cancer diagnosis a set of indications are identified, and diagnostic procedures and treatment options are allocated a time frame based on a judgment of what is medically and organisationally possible to detect, diagnose and treat. The care provider must then hold each time-slot, which creates a time-bound clinical guideline. When this is applied to all or a large share of the patients, a standardized care pathway (SCP) is created. Implementation started 2015 with five diagnoses; acute myeloid leukemia, head and neck, esophageal and stomach, prostate, and ureteral and bladder cancer. These were selected to represent different types of treatment processes and had relatively recently updated traditional medical guidelines. The model can be designed for the full range or a subset of a care process. The Swedish SCP is based on a concept called well-founded suspicion designed specifically for each cancer diagnosis. Well-founded suspicion is a term introduced with the reform program and emerges at a point in time when a set of indicators and test results show a substantial risk of cancer in either primary or secondary care. The SCP ends with the start of first cancer treatment (Fig. 1). The general perception of Swedish cancer care is that once treatment is started, patients are provided with timely and effective care. The SCP reform program covers a relatively short section of the entire process a cancer patient experiences from disease suspicion and onwards. Still, it involves several care providers, professions and levels of care that challenges patient centeredness and integration of services. For each cancer diagnosis a manual for SCP is developed nationally by diagnosis specific multi-professional expert teams. The SCP manual describes the set of symptoms that should lead to a suspicion of cancer and requiring further investigations. It also defines which symptoms and diagnostic results delineate well-founded suspicion of cancer and specify what the referral to a sub-specialist must contain. Also, the patient must be informed about what will happen next and within which time-frame she can expect each further step. The SCP manual also specifies waiting time for a specialist appointment, time required for each described diagnostic procedure prior to treatment, time needed for pathological and other analysis and a multidisciplinary meeting. The total number of days from well-founded suspicion of cancer to start of first treatment is defined by the total number of days for each step and constitutes the total target time for the diagnosis. The graph (Fig. 2) displays waiting times to start of treatment for invasive ureteral and bladder cancer for each of the 21 Swedish counties in The graph shows that for ureteral and bladder cancer, no county could provide even 25% of its patients care within the new SCP target time goal. The figure shows a significant variation between and within counties [13]. 3. Stakeholders are actively involved in implementation The cancer SCP reform program was initiated by the Swedish central government (Ministry of Social Affairs), but SALAR, the Regional Cancer Centres, each region, and patients representatives are together responsible for the design and implementation of the program. The process is complemented by a continuing dialogue between the Ministry and the implementing bodies. Less formal actors are the diagnosis-specific multi-professional teams that supply the necessary medical knowledge and represent the care professions. The cancer SCPs are thus developed by medical specialists and multi-professional care teams, and thereby flips the top down initiative into a reform which is designed bottom up. This is similar to the Danish integrated cancer care pathways reform, with all stake-

3 1380 J. Wilkens et al. / Health Policy 120 (2016) Fig. 1. Illustration of the standardized care pathway. holders given a chance to influence the design. The Swedish National Board of Health and Welfare has been assigned to monitor and evaluate the cancer SCPs and has for this purpose formed an expert group with a broad range of expertise, e.g. in improvement sciences and quality assessment, clinicians and patient representatives. In addition to a central agreement with SALAR, the 21 independent Swedish counties are incentivized to implement the reform with a national grant of two billion Swedish kronor over four years. This is equivalent to approximately 23 D per capita which likely is of a more symbolic nature. More important factors for a successful outcome of the program are e.g. a widespread consensus of its priority, and the medical professions engagement. All counties have met the requirements stipulated for the incentive scheme during the first year of reform. If effective, the central government this way stimulates the reorganisation of health services in cancer care with relatively small additional resources. 4. Anticipated effects There are three objectives of the cancer SCP program. A shorter waiting time to start of first treatment is the most significant. The reform has been named the new waiting time reform and by the government given the motto Each Day Counts! A second explicit objective is increased patient satisfaction with cancer care. Patients should be better informed and more involved in their own care process. The third objective is increased equity in cancer care. The interpretation of this objective is vague in the policy documents. In the Swedish policy debate it is most often interpreted as decreased geographical waiting times variation, even though this is a narrow definition of equity. As indicated by Fig. 2, this is a well-documented underperformance of the Swedish health system. In the longer perspective the cancer SCP reform is also expected to have an impact on other health services than cancer care. With more standardized pathways for cancer patients, the health system as a whole can be expected to learn and build new and more streamlined ways of working, and achieve higher efficiency. 5. Challenges to the approach The cancer SCP reform program is targeting several well recognized problems and there is a broad consensus about the need to standardize health care services. But a set of challenges have also been brought forward in the initial phase of designing the reform. A basic assumption behind the SCP is that cancer diagnostics is a linear process in which patients all need the same services in the same order, which enables providers to apply a production logic matching this process. The Danish experience shows that this is possible for a majority of cancer patients [8], even though it is probably more difficult when moving from diagnostics to treatment. To frail patients and patients with considerable comorbidity, it is more difficult to apply the same standardized pathway. There is also a trade-off between how fast and how accurate diagnostic procedures can be conducted. For hard-to-diagnose patients, a longer time frame can be frustrating, but might be necessary to provide the best treatment. Another potential challenge is crowding out effects and issues related to horizontal priorities. An example of a

4 J. Wilkens et al. / Health Policy 120 (2016) SCP target level (green line): 12 days Risk groups included: Tis, Ta and T1 (non-invasive, M1 excluded) The green vertical line (i.e. 12 days) represents the target waiting time to start of treatment according to the SCP. For each county waiting time is expressed in median and quintile values. Sweden (1864) Västmanland (52) Värmland (65) Sörmland (30) Västerbotten (54) Gävleborg (37) Uppsala (61) Skåne (296) Norrbotten (43) Jämtland (27) Kalmar (57) Örebro (40) Dalarna (48) Östergötland (81) Västernorrland (35) Västra Götaland (355) Kronoberg (35) Stockholm (347) Jönköping (77) Halland (82) Blekinge (33) Gotland (9) County (number of patients) Number of calendar of days Source: Swedish National Registry for Urinary Bladder Cancer Fig. 2. Time from referral to start of treatment for ureteral and bladder cancer, all Swedish counties. crowding out effects that needs to be monitored is that of other cancer patients who are in a later stage of the care pathway. For example, in combination with a shortage of urologists, focus on the early part of the pathway for prostate cancer patients might lead to prioritizing outpatient diagnostic services over hospital treatment. As a result of the focus on cancer, patients with other diseases might experience a lower priority. For example, pre-booked time slots for diagnostic cancer tests might affect other patients groups. Thus, there is a need to continuously increase awareness about issues related to horizontal priorities in order to effectively avoid unintended effects, thus making sure that the Swedish guidelines and the so called ethical platform guiding medical prioritization, are adequately respected and taken into account [1]. A third challenging area is the need for more integrated care models. Different health care providers will need to work together more closely for the cancer SCP reform to be successful. The above described manuals for SCP have clearly described at what stage in the diagnostic pathway the GP shall refer the patient to a specialist. This clarifies, at least in theory, which investigations should be conducted when and where. But to what extent this will work or how fast it will be implemented in practice is yet to be seen. Different groups of specialists might have different views of who should do what in the diagnostic process, based on their professional experience. There are also large structural regional differences across the country with respect to the role of primary health care (PHC). In rural areas PHC traditionally have a larger responsibility for basic diagnostic and health care services. The structural differences might also play a part in the interface between out-patient specialist services and hospital services, since the former is much more common in urban areas.

5 1382 J. Wilkens et al. / Health Policy 120 (2016) Furthermore, a parallel reform process to concentrate advanced hospital services to fewer geographical locations is taking place in Sweden, which also requires new clinical routines. It is argued that with 21 independent counties, many services including cancer treatments are provided in too many places to keep medical skills and efficiency on high levels. 6. Conclusions Starting in early 2015 with five cancer diagnoses, Sweden has embarked on a nationwide program to standardize cancer patient pathways. In 2016 and 2017 the cancer SCP effort will be covering almost all cancer diagnoses. The prospects for nationwide impact, in spite of the strongly decentralized system, looks promising due to a broad stakeholder engagement: The county councils are incentivized with a relatively marginal budget support and the different professions in cancer care are invited to work out the details of the reform. The new multi stakeholder approach to standardising by time-bound guidelines may be useful for other countries and jurisdictions to learn from. Conflicts of interest None to declare. Authors contributions The first author (JW) drafted the manuscript. All four authors (JW, HT, IS and CC) have contributed to its content. Two of the authors (JW and CC) have designed the monitoring and evaluation project at the National Board of Health and Welfare (Sweden). Acknowledgements References [1] Anell AGA, Merkur C. Health system in transition. European Observatory on Health Systems and Policies 2012;14: [2] Riksrevisionen. Agreement between the Government and SALAR within health and medical care voluntary participation but difficult to decline [3] Coleman MP, Forman D, Bryant H, Butler J, Rachet B, Maringe C, et al. Cancer survival in Australia, Canada, Denmark, Norway, Sweden, and the UK, (the International Cancer Benchmarking Partnership): an analysis of population-based cancer registry data. Lancet 2011;377: [4] De Angelis R, Sant M, Coleman MP, Francisci S, Baili P, Pierannunzio D, et al. Cancer survival in Europe by country and age: results of EUROCARE 5 a population-based study. The Lancet Oncology 2014;15: [5] Waiting time in cancer care. Sweden: The National Board of Health and Welfare; [6] Waiting time in cancer care. Sweden: The National Board of Health and Welfare; [7] A national cancer strategy for the future. Report of the Commission of Inquiry on A National Cancer Strategy. Stockholm: Fritzes Offentliga Publikationer; [8] Probst HB, Hussain ZB, Andersen O. Cancer patient pathways in Denmark as a joint effort between bureaucrats, health professionals and politicians a national Danish project. Health Policy 2012;105: [9] Dyrop HB, Vedsted P, Safwat A, Maretty-Nielsen K, Hansen BH, Jorgensen PH, et al. Alarm symptoms of soft-tissue and bone sarcoma in patients referred to a specialist center. Acta Orthopaedica 2014;85: [10] Jensen H, Torring ML, Olesen F, Overgaard J, Vedsted P. Cancer suspicion in general practice, urgent referral and time to diagnosis: a population-based GP survey and registry study. BMC Cancer 2014;14:636. [11] Jensen H. Implementation of cancer patient pathways and the association with more timely diagnosis and earlier detection of cancer among incident cancer patients in primary care. Aarhus: Faculty of Health Sciences, Aarhus University; p [12] Larsen MB, Hansen RP, Hansen DG, Olesen F, Vedsted P. Secondary care intervals before and after the introduction of urgent referral guidelines for suspected cancer in Denmark: a comparative beforeafter study. BMC Health Services Research 2013;13:348. [13] Standardised cancer care pathways, basline report. Sweden: The National Board of Health and Welfare; The monitoring and evaluation project is funded by the Ministry of Health and Social affairs.