Introduction

Healthcare’s most important societal mission is basically to minimize pathological suffering and maximize well-being.

Ever since the human species first emerged, we have time and again pushed the boundaries of what is possible and what is not. Small wounds that previously could only be hoped would not mean a death sentence can now be stopped by something as simple as soap and water. Infections that previously claimed millions of lives have now been defeated with antibiotics and vaccines. The hearts can be replaced and reused. None of this would have been possible if man had not strived to constantly improve his existence with tools, innovation, technology and science.

The Pirate Party views rising currents of bioconservatism with concern as this prevents people from reaching their full potential. “Natural” and “unnatural” have become loaded words used to justify or reject something. We turn against this false dichotomy

The Pirate Party believes that all people should be treated with basic dignity and with regard to the individual’s integrity, especially when one is in need of care and concern.

Like all sectors, healthcare is affected by digitalisation. However, the attempts made so far to digitize care have often been clumsy and have not always led to better care. The systems have often been created through poor procurement, which often resulted in technical lock-in effects that make it difficult for healthcare staff as well as users and patients. Here, the Pirate Party stands for an alternative policy and governance. The digitization of care must put user-friendliness and safety at the center.

1. Sovereignty and flexibility

The information generated in care and social care is one of the most sensitive digital impressions a person leaves during their lifetime. It also has enormous economic value. It is therefore of the utmost importance that this information is only collected when necessary and that when it is done, it is protected with the highest possible security. At the same time, patient data must be available when it is needed to care for the patient, even if the patient moves or otherwise changes care providers. Information systems in healthcare should be seen as a central and protective part of the country’s infrastructure.

Therefore, we want to:

§1 That “Privacy by design”, consideration of patients’ privacy, ease of use and control over data and IT infrastructure become central requirements in the development, purchase and use of digital solutions for healthcare;

§2 That today’s regional record system be replaced by systems based on a common nationwide and decentralized infrastructure that will form the basis for record keeping;

§3 That the healthcare provider whose activities are financed by the public sector always strives to use open software and open standards in its IT solutions as much as possible;

§4 That perspectives from both patients and healthcare professionals are taken into account when healthcare IT infrastructure is procured, developed or procured. These stakeholders must be involved in the entire process and patient participation must be designed so that it is representative of the patient group as a whole.

2. Robust and sustainable care and care

Society’s costs for care and social care have increased since the 1990s. In part, this can be explained by the fact that the new methods used in care deliver better, but at a higher price. Increased needs of an aging population are also part of the explanation. More recently, however, it has emerged that the increased expenditure is partly due to inefficient organization and governance rather than costly treatments. An example of this is working conditions that lead to extensive sick leave, high staff turnover and a great need for costly replacement staff. This has proven to have fatal consequences for the healthcare system’s crisis preparedness.

Therefore, we want to:

§5 Care organizations are structured in such a way that the workload of its staff becomes reasonable and manageable;

§6 Primary care is strengthened so that it has the capacity to handle the broader mission it has been given in recent decades. More and more care and more and more types of care are performed today in primary care;

§7 Primary care is given the opportunity and incentive to work preventively with patients’ health;

§8 Health care resources are allocated as much as possible to running care rather than to bureaucracy. The administration and bureaucracy in care should be limited to things that facilitate care and that are necessary for its operation. The technical systems used for this administration must be easy to use for our staff and secure to store patients’ sensitive data.

3. Transparency and responsibility

Today, large amounts of data are generated in healthcare. This data is collected both at regional and national level. Today, this data is used for everything from research and efficiency analyzes to forecasts.

Although the purpose of this is often good, today there is a great lack of general awareness that this data exists and how it is used.

Therefore, we want to:

§9 That the Privacy Authority is charged with the responsibility of producing comprehensible information about the existence of this data and what it is used for;

§10 That an information portal is established where the public can read about the research projects for which their spring data is used;

§11 That the research that is done on the publicly owned care data, or is financed by public funds to the greatest extent possible, is published under Open Access;

§12 That the protection of those who raise the alarm about misconduct in care or care (so-called whistleblowers) is strengthened;

§13 That national quality registers that receive public funding establish a system where the patients affected by the data collection have the opportunity to have input on the register’s development and operational direction. Exemplary examples can already be found today among several registers. in the form of participation advice and representation from patient associations.

4. E-health and distance care

Technological development has enabled new ways of making care available to patients. Examples of this are psychologist calls via app, but also more traditional phenomena such as the Helpline for people with suicidal thoughts.

It is important to ensure that care takes advantage of these opportunities and that this takes place in a way that is sustainable and integrated into care in general.

Therefore, we want to:

§14 Health care advice 1177 is expanded to include, in addition to nurses, other professions, such as on-call doctors and psychotherapists;

§15 The activities of medical helplines, such as those for people with suicidal thoughts, psychiatric illnesses or unwanted sexuality (prevenTell) are given additional resources;

§16 It will be possible to contact these services anonymously.

5. Governance and organization.

Today, care is organized in three main layers, where execution is primarily the responsibility of the regions. The idea of ​​this decentralization is to move the decision closer to the citizens and the local conditions of each region and municipality. This approach is commendable, but cannot be achieved with today’s organization in healthcare

Even though it is centralized on paper, it is characterized by an entrenched hierarchical structure that makes the organization administratively sluggish and entrenched. This becomes particularly clear in a crisis.

These hierarchical structures include not least a comprehensive bureaucracy, whose significance for the core mission is highly questionable.

Therefore, we want to:

§17 The political management of care takes place in close contact with the profession.

6. Evidence-based, for real

According to law, healthcare treatments must be based on science and proven experience. At the same time, care must often be able to act in uncertainty and the lack of evidence or proven experience so as not to lead to paralysis of action in crises or other serious situations

The continuous development of medical science means that certain previously well-established practices in healthcare sometimes turn out to be ineffective, or even harmful. It is important that harmful, ineffective or outdated practices are not considered worthy of protection due to organizational inertia, lack of competence development, or lack of dynamism in working methods

Therefore, we want to:

§18 The patient’s opportunity for a second opinion and accompanying treatment is strengthened and expanded. The additional costs a second opinion can entail should not affect the patient. It must also be possible to request a second opinion in the entire EU/EEA area, not just within Sweden;

§19 The legal protection for so-called whistleblowers in healthcare is strengthened. The aim is that as an employee you should be able to report misconduct at your workplace without risking reprisals from the employer;

§20 Practice in care and social care is continuously re-evaluated, taking into account the current scientific situation;

§21 Care participates in international collaborations to facilitate the discovery of systematic errors in the care apparatus;

§22 Patients must be able to request to undergo treatment that has passed at least a phase 1 trial. This treatment must be able to be given outside the scope of clinical studies, but must still be documented and reported to the relevant authorities. Treatment that has not undergone a phase III trial can only be requested if the condition in question is likely to cause death, severe suffering or a significant permanent reduction in the quality of life and the patient is capable of understanding the risks that treatment may entail. It is the doctor’s responsibility to ensure that the patient is aware of the risks;

§23 It is required that practice in social services and care is based on the best available evidence.

7. Integrity in care and social care

More recently, more voices have been raised advocating for more monitoring within care, under the pretext that this increases security for care recipients and makes it easier for the staff. The Pirate Party sees the positives in this development, but believes that users’ privacy and right to privacy should not be overlooked in the name of efficiency. A similar development has taken place in the field of assistive devices when more and more functions have moved into so-called “welfare technology”. It is often commercial so-called “smart technology”, and this technology often collects a lot of information without the user’s informed consent,

Therefore, we want to:

§24 Monitoring within the framework of care and care may only take place with express and informed opt-in consent. Access to care is not conditioned on such consent;

§25 When procuring equipment, welfare technology and aids, to the greatest extent possible, welfare technology is procured that is based on open source code and only collects input data that is necessary for the function. Data for development may only be collected with explicit informed consent that the user has understood.

8. Autonomy and personalized medicine

Care must be ready to meet a society’s citizens, including minorities and vulnerable groups. Special treatment in healthcare should only take place for medical reasons and on the basis of medical assessments.

The patient must have the right to define for himself what health and well-being are for him. Standardized treatments do not suit everyone. A consequence of this is that a treatment for one patient may be harmful for another. It is therefore essential that care is individual-centred. Care must respond to each patient based on their own conditions and perspective.

The ability to contact care anonymously is important to ensure the patient’s privacy and security. Fear of, among other things, keeping records or reporting to the authorities can make patients on the periphery of society shy away from seeking care that they really need. This applies especially to those groups in society who already have low trust in healthcare, for example trans people, people with trauma or other mental problems, national minorities and people with lower education.

The importance of the principle of autonomy is greatest when the evidence is inconclusive and the risk assessment speculative. In these cases, it is of extra importance that the final choice is made by the patient. A patient should not be deprived of the right to choose to take a risk.

Therefore, we want to:

§26 Outdated regulations that result in people being completely excluded from the possibility of suitability testing as a donor of blood or other tissue are abolished: Such restrictions should be based on the occurrence of actual risk behaviors rather than the individual’s sexual orientation or gender;

§27 The care and care shall not require the identification of citizens when they contact it if it is not necessary to fulfill the mission of the care;

§28 The patient himself shall have the right to receive complete information about his diagnosis and its treatment options. Information that risks creating unnecessary concern, for example rare side effects of a medicine, must not be withheld from the patient unless the patient himself requests it;

§29 Investigate alternative assessment criteria as substitutes and complements to standardized age limits for various treatments. People of the same age are often highly heterogeneous in other ways, and an excessive focus on age risks undermining treatment effectiveness, outcomes, and precision;

§30 Decisions about care related to sexual and reproductive health and rights, such as sterilization and other contraceptives, hormone therapy, hysterectomy, abortion and gender-affirming care, must by default be made by the patient himself and not by a health care provider or authority. Restrictions in the empowerment of sexual and reproductive health and rights should only be allowed when there are special reasons based on medical evidence, and never on prejudice, norms or ideology.

9. A dignified care for people with problematic substance use

The repressive drug policy that Sweden has pursued for several decades has led to our drug-related mortality being among the highest in the world. It also leads to far too many who would need to seek treatment for their problematic substance use refraining from doing so due to fear of legal sanctions

Piratparitet wants to see a changed drug policy and an addiction treatment that focuses primarily on providing adequate care that leads to recovery for citizens who suffer from problematic substance use.

Therefore, we want to:

§31 Healthcare personnel who can be expected to come into contact with people who use substances must have access to opioid receptor antagonists such as Naloxone in order to reverse the effects of overdose. This must be able to be shared without requiring the person who needs the preparation to be registered or in any other way;

§32 Investigating the possibility of using heroin-based substitution treatment to help people with problematic opioid use recover from this and reintegrate into society when conventional substitution treatment has failed;

§33 Receptions where drug addicts can go to use drugs under the supervision of a doctor, so-called user rooms, are established in the country.