Sweden report-1

The CAM Inquiry

in Sweden

Our Swedish member SATCM represented by Hanna Angerud and Roger Svensson was engaged since over one year in an important government CAM related commission: The CAM Inquiry. Strongly supported by ETCMA via references transfer and advice they worked on commissions understanding of how TCM can support the national health system. ETCMA congratulates these two hard workers for the continuing and high level engagement. Please read about the details here

Summary SOU2019:1532

The researchers present several proposals to improve citizens’ access to independent information on complementary and alternative care, including descriptions of methods used, at the national information website 1177Vårdguiden. Improved consumer-directed information on complementary and alternative care with focus on consumer rights should be available at the website of the Swedish Consumer Agency.

  • In an additional directive, the inquiry has been commissioned to review parts of the Patient Safety Act that address issues on complementary and alternative care. This will be presented separately in our final report. In April 2017, the Swedish government appointed a special investigator to explore several issues concerning “care and treatment other than that conducted in the established care”. The inquiry was titled The CAM Inquiry, CAM being the abbreviation of Complementary and Alternative Medicine. In July 2018, the inquiry received an additional task to review the paragraph of the Patient Safety Act that concerns treatment by non-licensed therapists (formerly “the quackery law”) (a law which have not existed in Sweden since 1969 SATCMs comment.) and the accompanying penal provisions.

This will be reported separately later. In this summary, we first report on the inquiry’s considerations and proposals according to our specific terms of reference. Then, we describe the background material we have collected, including mappings, reviews of previous governmental inquiries, published material and interviews with stakeholders in the area. Lastly, we describe how the inquiry has worked.

Definition used by the enquiry are presented in Fact Box 1.

Fact Box 1. Definitions To comply with the government’s terms of reference, we have used operational definitions. Our definitions are close to those used in Norwegian and Danish legislation. The definition of health care is that of the Patient Safety Act. Complementary and alternative medicine(CAM)is the conceptual and knowledge basis of complementary and alternative care (CAC). Complementary and alternative medicine/care means healthcare-related methods and other interventions that are entirely or mostly applied outside of healthcare. Integrative care aims at integrating complementary methods with the methods used in healthcare under certain conditions. Healthcare is care provided by professionals that are subject to inspection by IVO, the Health and Social Care Inspectorate, and is based on either scientific evidence or proven experience among the healthcare professions.


Task 1 and 2: Review of the law

From the terms of reference:...

review if the right for those who are not licensed healthcare professionals to treat certain serious mental disorders should be restricted.

From the terms of reference added in July 2018:...

review the regulations in the 5th and 10th chapters of the Patient Safety Act and other relevant regulations [...].

The investigator should also propose bills that are judged to be required. Our proposals related to these two tasks will be presented separately in our final report.


Task 3 and 4: Research and methods of evaluation

From the terms of reference:...

perform a mapping of present results of research and ongoing research as to methods of treatment used out of healthcare.

and ...

to map what different methods of evaluation that are used for [CAM]treatments.

In addition, it should be reported to what extent the alternative methods that are subject to clinical testing in accordance with conventional practice and what possible obstacles to such testing that may exist.

We have commissioned a bibliometric analysis (qualitative analysis of the scientific literature) and interviewed stakeholders in this field, including researchers and funders of research. Worldwide, at least 5000 articles and book chapters on CAM and CAC are published each year. This represents 0.5-0.6 percent of all publications in medicine, health, and adjacent topics. Swedish researchers publish around 70 articles per year. A fifth of these publications are on clinical trials of CAM systems or CAM methods. Research on body-mind therapies and acupuncture dominate.

Topics in Swedish CAM research are similar to those of international research, with the exception of a greater focus on women’s health and disease in Swedish research. Swedish CAM research groups are, with a few exceptions, small. Collaborations between Swedish CAM researchers are strikingly sparse, and interdisciplinary research is uncommon.

Of the most cited Swedish articles, few are on primary research. Systematic reviews of the international literature show large numbers of scientific publications on certain types of CAM therapy, in particular acupuncture, homeopathy and body-mind therapies.

Because of methodological problems and diverging results, it has been difficult to draw definite conclusions. The Swedish Research Council, the Karolinska Institute and the Ekhaga Foundation are leading funders of Swedish CAM research. Most stakeholders in CAM research that we have interviewed consider insufficient funding to be the greatest obstacle. With the exception of the Ekhaga Foundation and the Sjöberg Foundation, research funding organisations that we have interviewed refuse the idea of earmarked funding of CAM research.

Our inquiry was not commissioned to present proposals in the area of CAM research.

We present, however, one proposal that seems to be relatively easy to realise:–

some of the national quality registers in healthcare could include CAC variables that may serve to promote knowledge on CAM methods.

Many of the CAM proponents we have met have emphasised that the research methods used in today’s research in medicine and health are not well suited for the CAM area. Instead of clinical trials, they want to see more individual narratives and other types of qualitative research and more emphasis on observational studies.

Concomitantly, we have met researchers in the CAM area who have underlined the importance of controlled trials on the effects of CAM methods. CAM practitioners also emphasise that they should be involved in the research. The CAMbrella Project funded by the European Union (EU) has developed a roadmap for European CAM research.


Task 5: Policy to introduce CAM methods in healthcare

From the terms of reference:...propose a policy to evaluate and regulate therapeutic methods that do not belong to established healthcare today but that, after evaluation, could be a valuable component of such care. The term science and proven experience is used in The Patient Act and The Patient Safety Act to describe the basis for healthcare. However, the term has not been defined. Science and experience often develop in interaction. In the Swedish system for governance by knowledge, there are structures to evaluate the strength of the scientific support and proven experience. CAM proponents as well as proponents of evidence-based medicine (EBM) in healthcare emphasise outcomes that are important to patients. In addition, EBM proponents usually underline that therapeutic methods should not contradict commonly accepted science in, for instance, biophysics, biochemistry, physiology or psychology (a plausibility criterion). When assessing any therapy, questions on unspecific effects arise.

This applies to methods in healthcare as well as in complementary and alternative medicine. Unspecific effects (placebo effects in abroad sense) may also be regarded as biologically beneficial and an asset to be taken advantage of in healthcare and complementary and alternative care. They encompass much of what is considered as “art of care” that may improve outcomes. These factors are common to integrative, complementary and alternative care as well as healthcare. Measures to promote confidence and positive expectations are in concert with the basic principles of EBM, while using placebo therapy under the prospect that it has specific effects is not in accordance with the individual’s right to make well-informed decisions.

However, CAM practitioners generally stress that the CAM therapies do have specific effects. We have reviewed a limited number of methods that have previously been considered as CAM therapies and have now been partially introduced in healthcare. Was it possible to discern a common pattern? We observed no such pattern. In Swedish healthcare, there is a generally accepted model for introduction of new methods in publicly financed healthcare. Important components in this governance by knowledge are systematic reviews with grading of evidence, a national priority-setting model, and national and local guidelines with systematic follow-up of implementation in clinical practice. In the inquiry, we consider that this model also should be applied for CAM methods that are candidates to be adopted by healthcare.

Thus, the model should be neutral as to origin, i.e., no special track for methods with a CAM origin should be initiated. To provide a high quality basis for priority-setting, we suggest that the government commission the Swedish Agency for Health Technology Assessment and Assessment of Social Services to perform an inventory of what CAM methods could be candidates to be introduced in healthcare and conduct assessments of the scientific support of those methods that are judged to be particularly relevant from this point of view.


Task 6: To promote contact and understanding in order to improve patient safety

From the terms of reference:...contribute to improve contacts and understanding between the established care and care out of the established care in order to improve patient safety. If the communication needs to be improved, proposals to this end shall be presented. “Improved understanding” may be interpreted in various ways. We have deemed it unrealistic to present proposals aimed at CAM practitioners at large to share the epistemology and models of explanation of healthcare and vice versa. Instead, we propose that healthcare professionals improve their knowledge of CAM and CAC and the thinking underlying the most common CAM systems and methods. We also propose that the CAM professional organisations work to improve knowledge about the methods of healthcare and their underlying models of explanation.

In accordance, we advise universities and colleges involved in education of physicians, nurses, physiotherapists, psychologists and dieticians to introduce a brief CAM course. The aim is that patients and healthcare professionals should be able to discuss CAM methods and thus facilitate patients’ possibilities to make well-informed decisions. Improved knowledge about CAM methods and possible interactions with healthcare methods could contribute to improved patient safety. We suggest that the National Board of Health and Welfare is commissioned to develop educational material on CAM and CAC for health care professionals. Other proposals that serve to contribute to “improved contacts and understanding” between CAC and healthcare concern CAM variables in selected national quality registers, a policy for accepting CAM methods in healthcare and a system for information to the public on CAM and CAC, which may also be used by healthcare professionals.


Task 7: Information system for citizens

From the terms of reference:...deliver a proposal of a system that contributes to patients getting such information that is needed to make well informed choices of care and avoid unserious and hazardous treatment options.

Presently, independent public information in Swedish on CAM and CAC is only presented in fragments on websites such as the official information site of the public healthcare providers (“1177 Vårdguiden”) or at websites of governmental agencies. An independent information system would improve the possibilities for citizens to exert an influence on their own care.

We deem that there is a need for independent information in Sweden on what characterises various CAM methods, what is known about possible benefits and risks and what a potential customer/ patient should know more generally if use of a CAM is considered. Information directed to citizens and healthcare staff should be available at a common portal and searchable by therapeutic methods, symptoms and diagnoses. We propose that an editorial board is placed at the National Board of Health and Welfare and that this authority is source owner of the information.

The editorial board is proposed to be supported by an advisory committee including representatives of users, CAM practitioners, healthcare and govern-mental agencies. To facilitate the production of information, we suggest agreements with existing information sites in Norway and Denmark. This information should be adapted to the Swedish setting by the editorial board.

We consider the information site 1177 Vårdguiden to be the most appropriate site for making the information available to the citizens. The information at 1177 may also be a source of information for healthcare staff seeking information on CAM methods. At the websites of governmental agencies in the healthcare arena, there is no easily accessed information on regulations, insurances or where to turn for complaints on a CAM treatment or a CAC practitioner. We therefore propose that the National Board of Health and Welfare be commissioned to coordinate generic information on CAC to citizens by governmental authorities. In addition, the Health and Social Care Inspectorate (IVO) should be mandated to clarify its role concerning handling of complaints in the CAM area. We propose that the Swedish Consumer Agency is commissioned to provide generic information on CAM at its website “Hallå konsument”.


Proposals to improve patient safety

Although not included in our specific tasks, the need for improved patient safety is emphasised in more general terms in the terms of reference. Several of our proposals are aimed at strengthening safety in complementary and alternative care. Our upcoming review of the Patient Safety Act regarding care provided by non-healthcare professionals will focus on safety issues. This part of the inquiry will be presented in a later report. A couple of our proposals aim at providing a person who uses CAC improved information to make well-informed decisions. The suggested information system described above includes information on what is known about possible health hazards. Our proposed policy for introducing CAM methods in health-care also has a patient safety dimension.

We suggest that CAM methods should not have a special track but be introduced according to the same model as other methods that are candidates to be adopted in healthcare. This includes a review of what is known about possible risks. Also, our proposal to introduce an education package on CAM and CAC has patient safety aspects. If it is materialised, there are prerequisites for more improved, more trustful communication on CAC issues between patients and healthcare professionals. The risk for interactions as well as the risk that the patient terminates effective treatment prescribed in healthcare will be reduced. Our proposal to include CAC variables in some of the national quality registers in healthcare will create the possibility to follow-up on safety issues in a more systematic way, when CAC is used.


Proposals directed to CAC practitioners and their organisations

In addition to proposals directed toward governmental agencies, universities and colleges and publicly financed healthcare, we find a need for the CAC sector to ascertain good patient safety. Thus, CAC professional organisations are encouraged to ensure that CAM-practitioners have basic education about the methods used in health-care and their underlying models of explanation. Safety aspects, such as a risk for interruption or reduction of effective treatment and possible interactions with treatment prescribed in healthcare should be addressed.

We emphasise the need for a strengthened dialogue between the CAC sector and the Swedish Consumer Agency. A collaboration could result in a branch agreement between the major CAC organisations and the Agency. If so, the agreement would clarify relevant rules and regulations for CAC practitioners. It would also provide the citizen who considers using CAC a basis for selection of a practitioner that meets certain standards regarding education, insurance and handling of complaints. Our general task was to investigate the question of a possible national register of CAC practitioners, but not a specific term of reference on this point. This question has been reviewed by previous governmental inquiries. None of the proposals has led to any initiatives by the government.


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