Trust and digital privacy in healthcare: a cross-sectional descriptive study of trust and attitudes towards uses of electronic health data among the general public in Sweden.

BACKGROUND: The ability of healthcare to protect sensitive personal data in medical records and registers might influence public trust, which in turn might influence willingness to allow healthcare to use such data. The aim of this study was to examine how the general public's trust relates to their attitudes towards uses of health data. METHODS: A stratified sample from the general Swedish population received a questionnaire about their willingness to share health data. Respondents were also asked about their trust in the management and protection of electronic health data. RESULTS: A large majority (81.9%) of respondents revealed high levels of trust in the ability of healthcare to protect electronic patient data. Good health was associated with significantly higher levels of trust compared to bad health. Respondents with low levels of trust were significantly less willing to allow personal data to be used for different purposes and were more inclined to insist on being asked for permission beforehand. Those with low levels of trust also perceived risks of unauthorized access to personal data to be higher and the likely damage of such unauthorized access worse, compared to those with high levels of trust. CONCLUSIONS: Trust in the ability of healthcare to protect electronic health is generally high in Sweden. Those with higher levels of trust are more willing to let their data be used, including without informed consent. It thus seems crucial to promote trust in order to be able to reap the benefits that digitalization makes possible through increased access and use of data in healthcare.

How to reveal disguised paternalism: version 2.0.

BACKGROUND: We aim to further develop an index for detecting disguised paternalism, which might influence physicians' evaluations of whether or not a patient is decision-competent at the end of life. Disguised paternalism can be actualized when physicians transform hard paternalism into soft paternalism by questioning the patient's decision-making competence. METHODS: A previously presented index, based on a cross-sectional study, was further developed to make it possible to distinguish between high and low degrees of disguised paternalism using the average index of the whole sample. We recalculated the results from a 2007 study for comparison to a new study conducted in 2020. Both studies are about physicians' attitudes towards, and arguments for or against, physician-assisted suicide. RESULTS: The 2020 study showed that geriatricians, palliativists, and middle-aged physicians (46-60 years old) had indices indicating disguised paternalism, in contrast with the results from the 2007 study, which showed that all specialties (apart from GPs and surgeons) had indices indicating high degrees of disguised paternalism. CONCLUSIONS: The proposed index for identifying disguised paternalism reflects the attitude of a group towards physician assisted suicide. The indices make it possible to compare the various medical specialties and age groups from the 2007 study with the 2020 study. Because disguised paternalism might have clinical consequences for the rights of competent patients to participate in decision-making, it is important to reveal disguised hard paternalism, which could masquerade as soft paternalism and thereby manifest in practice. Methods for improving measures of disguised paternalism are worthy of further development.

Trends in Swedish physicians' attitudes towards physician-assisted suicide: a cross-sectional study.

AIMS: To examine attitudes towards physician-assisted suicide (PAS) among physicians in Sweden and compare these with the results from a similar cross-sectional study performed in 2007. PARTICIPANTS: A random selection of 250 physicians from each of six specialties (general practice, geriatrics, internal medicine, oncology, surgery and psychiatry) and all 127 palliative care physicians in Sweden were invited to participate in this study. SETTING: A postal questionnaire commissioned by the Swedish Medical Society in collaboration with Karolinska Institute in Stockholm. RESULTS: The total response rate was 59.2%. Slightly fewer than half [47.1% (95% CI 43.7-50.5)] of the respondents from the six specialties accepted PAS, which is significantly more than accepted PAS in the 2007 study [34.9% (95% CI 31.5-38.3)]. Thirty-three percent of respondents were prepared to prescribe the needed drugs. When asked what would happen to the respondent's own trust in healthcare, a majority [67.1% (95% CI 63.9-70.3)] stated that legalizing PAS would either not influence their own trust in healthcare, or that their trust would increase. This number is an increase compared to the 2007 survey, when just over half [51.9% (95% CI 48.0-55.2)] indicated that their own trust would either not be influenced, or would increase. CONCLUSIONS: The study reveals a shift towards a more accepting attitude concerning PAS among physicians in Sweden. Only a minority of the respondents stated that they were against PAS, and a considerable proportion reported being prepared to prescribe the needed drugs for patient self-administration if PAS were legalized.

Respectful encounters from healthcare professionals and return to work among 9032 long-term sick-listed due to cancer or due to other diagnoses: results from a Swedish population-based survey.

PURPOSE: To examine whether experiences of positive respectful encounters and negative disrespectful encounters differ between sickness absentees with a cancer diagnosis and sickness absentees with other diagnoses, especially in relation to their ability to return to work (RTW). METHODS: A total of 9032 long-term sickness absentees in Sweden responded to a questionnaire (response rate 52%) about experiences of positive and negative encounters with healthcare professionals. The association between different types of such encounters and participants feeling respected or disrespected were calculated with population attributable risk with 95% confidence intervals (CI). The perceived impact on ability to RTW was also examined. RESULTS: Significantly, larger proportions among those who experienced a positive encounter and also felt respected stated that those encounters facilitated their ability to RTW, compared to those who experienced a positive encounter without feeling respected: among cancer absentees the difference in proportions were 21% (CI, 7-34) versus 50% (CI, 45-55); among absentees with other diagnoses 42% (CI, 37-47) versus 63% (CI, 61-64). Similar comparisons among sick-listed who experienced negative encounters indicated that also feeling disrespected impeded ability to RTW among a significantly larger proportion of those with other diagnoses [51% (CI, 48-54) versus 35% (CI, 31-39) of those not feeling disrespected]. Among cancer absentees, the corresponding proportions were 20% (CI, 9-30) versus 25% (CI, 9-41). CONCLUSIONS: Compared to sickness absentees with other diagnoses, a larger proportion of cancer sickness absentees stated that they were facilitated by respectful encounters and not impeded by disrespectful encounters, regarding self-estimated ability to RTW. More research is needed to examine whether these differences can be associated with use of a patient-centered encountering approach.

Challenges to patient centredness - a comparison of patient and doctor experiences from primary care.

BACKGROUND: We designed this observational study to investigate the level of patients' and doctors' ratings of patient-centred aspects of the primary care consultation. METHODS: Questionnaire study with patients and doctors. Consecutive patients in a primary care setting and 16 doctors responding post visit. Results are presented as proportions with 95% confidence intervals. RESULTS: 411 questionnaires, 223 from patients and 188 from doctors, covered 251 consultations. Both patients and doctors gave the highest possible estimations on the aspects of patient-centred communication and satisfaction less frequently when the patient had other reasons for visit than purely somatic. Unlike the doctors' estimations, the frequency of highest possible estimations in patient responses dropped if the patients had two to six reasons for visit rather than one. Among the six patient-centred aspects, both patients and doctors gave the highest possible estimation least frequently on the aspect of shared decision-making. CONCLUSION: The results suggest that the nature of the reason, as well as the number of reasons for visit, interferes with the doctors' level of patient-centred communication. Our results furthermore confirm the findings of previous studies that doctors insufficiently involve patients in their care.

From Child Protection to Paradigm Protection-The Genesis, Development, and Defense of a Scientific Paradigm.

A scientific paradigm typically embraces research norms and values, such as truth-seeking, critical thinking, disinterestedness, and good scientific practice. These values should prevent a paradigm from introducing defective assumptions. But sometimes, scientists who are also physicians develop clinical norms that are in conflict with the scientific enterprise. As an example of such a conflict, we have analyzed the genesis and development of the shaken baby syndrome (SBS) paradigm. The point of departure of the analysis is a recently conducted systematic literature review, which concluded that there is very low scientific evidence for the basic assumption held by Child Protection Teams: when certain signs are present (and no other "acceptable" explanations are provided) the infant has been violently shaken. We suggest that such teams have developed more value-based than scientific-based criteria when classifying SBS cases. Further, we suggest that the teams are victims of "groupthink," aggravating the difficulties in considering critics' questioning the criteria established by the teams.

Traumatic shaking: The role of the triad in medical investigations of suspected traumatic shaking.

The Swedish Agency for Health Technology Assessment and Assesment of Social Services (SBU) is an independent national authority, tasked by the government with assessing methods used in health, medical and dental services and social service interventions from a broad perspective, covering medical, economic, ethical and social aspects. The language in SBU's reports are adjusted to a wide audience. SBU's Board of Directors has approved the conclusions in this report. The systematic review showed the following graded results: There is limited scientific evidence that the triad (Three components of a whole. The triad associated with SBS usually comprises subdural haematoma, retinal haemorrhages and encephalopathy.) and therefore, its components can be associated with traumatic shaking (low-quality evidence). There is insufficient scientific evidence on which to assess the diagnostic accuracy of the triad in identifying traumatic shaking (very low-quality evidence). Limited scientific evidence (low-quality evidence) represents a combined assessment of studies of high or moderate quality which disclose factors that markedly weaken the evidence. It is important to note that limited scientific evidence for the reliability of a method or an effect does not imply complete lack of scientific support. Insufficient scientific evidence (very low-quality evidence) represents either a lack of studies or situations when available studies are of low quality or show contradictory results. Evaluation of the evidence was not based on formal grading of the evidence according to GRADE but on an evaluation of the total scientific basis.

"Right to recommend, wrong to require"- an empirical and philosophical study of the views among physicians and the general public on smoking cessation as a condition for surgery.

BACKGROUND: In many countries, there are health care initiatives to make smokers give up smoking in the peri-operative setting. There is empirical evidence that this may improve some, but not all, operative outcomes. However, it may be feared that some support for such policies stems from ethically questionable opinions, such as paternalism or anti-smoker sentiments. This study aimed at investigating the support for a policy of smoking cessation prior to surgery among Swedish physicians and members of the general public, as well as the reasons provided for this. METHODS: A random sample of general practitioners and orthopaedic surgeons (n = 795) as well as members of the general public (n = 485) received a mail questionnaire. It contained a vignette case with a smoking 57-year old male farmer with hip osteoarthritis. The patient had been recommended hip replacement therapy, but told that in order to qualify for surgery he needed to give up smoking four weeks prior to and after surgery. The respondents were asked whether making such qualifying demands is acceptable, and asked to rate their agreement with pre-set arguments for and against this policy. RESULTS: Response rates were 58.2% among physicians and 53.8% among the general public. Of these, 83.9% and 86.6%, respectively, agreed that surgery should be made conditional upon smoking cessation. Reference to the peri-operative risks associated with smoking was the most common argument given. However, there was also strong support for the argument that such a policy is mandated in order to achieve long term health gains. CONCLUSIONS: There is strong support for a policy of smoking cessation prior to surgery in Sweden. This support is based on considerations of peri-operative risks as well as the general long term risks of smoking. This study indicates that paternalistic attitudes may inform some of the support for peri-operative smoking cessation policies and that at least some respondents seem to favour a "recommendation strategy" vis-à-vis smoking cessation prior to surgery rather than a "requirement strategy". The normative reasons speak in favour of the "recommendation strategy".

Insufficient evidence for 'shaken baby syndrome' - a systematic review.

Shaken baby syndrome has typically been associated with findings of subdural haematoma, retinal haemorrhages and encephalopathy, which are referred to as the triad. During the last decade, however, the certainty with which the triad can indicate that an infant has been violently shaken has been increasingly questioned. The aim of this study was to determine the diagnostic accuracy of the triad in detecting that an infant had been shaken. The literature search was performed using PubMed, Embase and the Cochrane Library up to October 15, 2015. Relevant publications were assessed for the risk of bias using the QUADAS tool and were classified as having a low, moderate or high risk of bias according to predefined criteria. The reference standards were confessions or witnessed cases of shaking or accidents. The search generated 3773 abstracts, 1064 were assessed as possibly relevant and read as full texts, and 30 studies were ultimately included. Of these, 28 were assessed as having a high risk of bias, which was associated with methodological shortcomings as well as circular reasoning when classifying shaken baby cases and controls. The two studies with a moderate risk of bias used confessions and convictions when classifying shaken baby cases, but their different designs made a meta-analysis impossible. None of the studies had a low risk of bias. CONCLUSION: The systematic review indicates that there is insufficient scientific evidence on which to assess the diagnostic accuracy of the triad in identifying traumatic shaking (very low-quality evidence). It was also demonstrated that there is limited scientific evidence that the triad and therefore its components can be associated with traumatic shaking (low-quality evidence).

Existential decision-making in a fatal progressive disease: how much do legal and medical frameworks matter?

BACKGROUND: Healthcare legislation in European countries is similar in many respects. Most importantly, the framework of informed consent determines that physicians have the duty to provide detailed information about available therapeutic options and that patients have the right to refuse measures that contradict their personal values. However, when it comes to end-of-life decision-making a number of differences exist in the more specific regulations of individual countries. These differences and how they might nevertheless impact patient's choices will be addressed in the current debate. MAIN TEXT: In this article we show how the legal and medical frameworks of Germany, Poland and Sweden differ with regard to end-of-life decisions for patients with a fatal progressive disease. Taking Amyotrophic Lateral Sclerosis (ALS) as an example, we systematically compare clinical guidelines and healthcare law, pointing out the country-specific differences most relevant for existential decision-making. A fictional case report discusses the implications of these differences for a patient with ALS living in either of the three countries. Patients with ALS in Germany, Poland and Sweden are confronted with a similar spectrum of treatment options. However, the analysis of the normative frameworks shows that the conditions for making existential decisions differ considerably in Germany, Poland and Sweden. Specifically, these differences concern (1) the legal status of advance directives, (2) the conditions under which life-sustaining therapies are started or withheld, and (3) the legal regulations on assisted dying. CONCLUSION: According to the presented data, regulations of terminating life-sustaining treatments and the framework of "informed consent" are quite differently understood and implemented in the legal setting of the three countries. It is possible, and even likely, that these differences in the legal and medical frameworks have a considerable influence on existential decisions of patients with ALS.

Value-impregnated factual claims and slippery-slope arguments.

Slippery-slope arguments typically question a course of action by estimating that it will end in misery once the first unfortunate step is taken. Previous studies indicate that estimations of the long-term consequences of certain debated actions, such as legalizing physician-assisted suicide, may be strongly influenced by tacit personal values. In this paper, we suggest that to the extent that slippery-slope arguments rest on estimations of future events, they may be mere rationalizations of personal values. This might explain why there are proponents even for strikingly poor slippery-slope arguments.

Heed or disregard a cancer patient's critical blogging? An experimental study of two different framing strategies.

BACKGROUND: We have examined healthcare staff attitudes of toward a blogging cancer patient who publishes critical posts about her treatment and their possible effect on patient-staff relationships and treatment decisions. METHODS: We used two versions of a questionnaire containing a vignette based on a modified real case involving a 39-year-old cancer patient who complained on her blog about how she was encountered and the treatment she received. Initially she was not offered a new, and expensive treatment, which might have influenced her perception of further encounters. In one version of the vignette, the team decides to put extra effort into both encounters and offers the expensive new cancer treatment. In the other version, the team decides to follow the clinic's routine to the letter. Subsequently, blog postings became either positive or negative in tone. We also divided participants into value-neutral and value-influenced groups (regarding personal values) by asking how their trust in healthcare would be affected if the team's suggestion were followed. RESULTS: A total of 56 % (95 % CI: 51-61) of the respondents faced with a team decision to 'do something-extra' in encounters would act in accordance with this ambition. Concerning treatment, 32 % (95 % CI: 28-38) would follow the team's decision to offer a new and expensive treatment. A large majority of those who received the "follow-routine" version agreed to do so in encountering [94 % (95 % CI: 91-97)]. Similar proportions were found regarding treatment [86 % (95 % CI: 82-90)]. A total of 83 % (95 % CI: 76-91) of the value-neutral participants who received the "do-something-extra" version stated that they would act as the team suggested regarding encounters, while 57 % (95 % CI: 47-67) would do so in regard to treatment. Among the value-influenced participants who received the "do-something-extra" version, 45 % (95 % CI: 38-51) stated that they would make an extra effort to accommodate the patient and her needs, while the proportion for treatment was 22 % (95 % CI: 16-27). Among those who had received the "follow-routine" version, a large majority agreed, and no difference was indicated between the value-neutral and the value-influenced participants. CONCLUSION: The present study indicates that healthcare staff is indeed influenced by reading a patient's critical blog entries, largely regarding encounters, but also concerning treatment is concerned. Value-neutral healthcare personnel seem to exhibit a pragmatic attitude and be more inclined to heed and respond to a patient whose criticism may well be warranted. The study also indicates that healthcare staff is partly positive or negative to future blogging patients depending on how the issue has been framed. For future research we suggest as a bold hypothesis that the phrase "clinical routine" might conceal power aspects masquerading as adopted ethical principles.

Zero tolerance against patriarchal norms? A cross-sectional study of Swedish physicians' attitudes towards young females requesting virginity certificates or hymen restoration.

Many countries, Sweden among them, lack professional guidelines and established procedures for responding to young females requesting virginity certificates or hymen restoration due to honour-related threats. The purpose of the present survey study was to further examine the attitudes of the Swedish healthcare professionals concerned towards young females requesting virginity certificates or hymen restorations. The study indicates that a small majority of Swedish general practitioners and gynaecologists would accommodate these patients, at least given certain circumstances. But a large minority of physicians would under no circumstances help the young females, regardless of speciality, years of practice within medicine, gender, or experience of the phenomenon. Their responses are similar to other areas where it has been claimed that society should adopt a zero tolerance policy against certain phenomena, for instance drug policy, where it has also been argued that society should never act in ways that express support for the practice in question. However, this argument is questionable. A more pragmatic approach would also allow for follow-ups and evaluation of virginity certificates and hymen restorations, as is demonstrated by the Dutch policy. Hence, there are some obvious advantages to this pragmatic approach compared to the restrictive one espoused by a large minority of Swedish physicians and Swedish policy-makers in this area.