Centralising Care with the Patient in the Centre

This report aims to evaluate and analyse how level structuring in national specialised medical care has taken into account the patient’s perspective in inquiries, decisions, processes and organisation. It also aims to identify how the patient’s perspective may gain greater impact in the future.

Background 

An important organisational principle in healthcare is that care should be given at a level that provides the best possible end result for the patient – while at the same time, of course, giving due consideration to efficiency in resource utilisation. The allocation of healthcare efforts at the optimal level – a form of work allocation – is often referred to as “level structuring”. Most of the work on level structuring is done by the public health authorities in the regions and county councils. However, a number of important national level structuring efforts are taking place. This report deals with one of these: the work being done on national specialised medical care (rikssjukvård). National specialised medical care aims solely to achieve level structuring of the most highly specialised care. The idea behind national specialised medical care is that higher quality, and a better use of resources, can be achieved if certain types of highly specialised care are concentrated in a small number of hospitals. The Swedish National Board of Health and Welfare (Socialstyrelsen) has recently presented an investigation into the work being done on national specialised medical care. For reasons of lack of time, the views and experiences of the patients were excluded from the work done on national specialised medical care in this investigation.

Purpose 

Our report aims to evaluate and analyse how level structuring in national specialised medical care has taken into account the patient’s perspective in inquiries, decisions, processes and organisation. The report also aims to identify how the patient’s perspective may gain greater impact in the future. We have therefore examined which factors are important to patients in respect of decisions on level structuring at national level within the framework of national specialised medical care. We have also looked at the possible consequences of handling these in a more structured way.

Implementation

The study is built on published literature, documentation from authorities, in-depth interviews with patient representatives and players directly involved in national specialised medical care, and a patient questionnaire sent to the members of four patient organisations. In the literature study, information was sought relating to factors affecting the patient’s preferences when choosing healthcare. We also looked for international examples and case studies that illustrate how the patient’s perspective has been handled in countries with similar healthcare systems to that of Sweden. The in-depth interviews involved representatives of patient organisations, members and officials within the Committee for National Specialised Medical Care (Rikssjukvårdsnämnden), and representatives from the Swedish Ministry of Health and Social Affairs (Socialdepartementet), the Swedish National Board of Health and Welfare and a number of county councils. The patient questionnaire was sent to members of four patient associations and replies were received from both patients and close relatives of patients. The questionnaire contained questions on which factors are of importance in the healthcare provided to the patient. It also contained questions on the factors that would be positively or negatively affected if healthcare were to be centralised to a greater degree. A total of 561 people responded to the questionnaire.

CONCLUSIONS

Our assessment has clearly shown that there are, above all, three factors in national specialised medical care that are important from the patient’s perspective:

1. Medical results and safe care – That the patient should have access to care of the highest possible medical quality.

2. Properly functioning healthcare chains – That the entire healthcare chain is taken into consideration in investigations and decisions, and that communication between units functions once an activity has been centralised.

3. Patient involvement – That patients are able to be involved in the national specialised medical care process, and that use is made of their unique knowledge about their condition and care.

There are no grounds to question the assertion that decisions regarding national specialised medical care have been taken with the patient’s best interests in mind. However, we can draw the following conclusions about the current national specialised medical care process, based on the factors that patients value most highly:

  • The current process for defining national specialised medical care takes too long and probably leads to too few decisions in favour of concentration

The most important factor for the patients is that the quality of care provided should be high, and that the best possible medical outcome is achieved from the treatment. From the patients’ point of view, activities should be concentrated where these achieve better medical results and increased patient safety if conducted in fewer locations. It has not been our aim to try to identify such activities. However, the assessment does indicate the likelihood that it would be possible to concentrate more activities than the twelve that have currently been identified as national specialised medical care in order to improve the results of medical care. For example, in Denmark 70 areas of activity have been defined as national specialised medical care. There are a number of underlying reasons why so few areas are conducted as national specialised medical care in Sweden. The nomination process has not been designed appropriately to take up all potentially relevant activities for examination. To an extent, an atmosphere of competition has arisen among the county councils and the regions instead of one of cooperation, thus hindering development. The inquiry before decisions on national specialised medical care are made takes a long time (over three years). The process for defining national specialised medical care is an unwieldy one. There are examples where the work has come to a standstill when the hospitals were being chosen that would receive a licence to carry out some types of highly specialised care. This is despite the fact that everyone was agreed that there should be some concentration. We also note that there have been deficiencies in the monitoring of the activities that have been granted licences to be carried out as national specialised medical care.

  • Difficult to get the healthcare chains to work

From the patient’s perspective, properly functioning healthcare chains are one of the most important factors. The entire healthcare chain – as well as the organisational problems that arise when already established healthcare chains and contact networks break down – therefore needs to be taken into consideration in the inquiries into national specialised medical care. In some cases, there may be a conflict that needs to be resolved between improved medical quality and functioning healthcare chains. An important area for development is to ensure that healthcare chains perform properly and that there is good cooperation been national specialised medical care units and the associated local county councils.

  • Insufficient or no systematic patient involvement

Patients have unique knowledge and experience of their illnesses, as well as wishing to be more involved in the work being done on national specialised medical care. Currently, the patient associations act as referral bodies. Most likely, patients’ experiences and knowledge could be used to a greater degree, and in other ways, during the work of the inquiry. The Swedish National Board of Health and Welfare has proposed that nominations should be opened up to allow more players to propose activities that should be examined for national specialised medical care. This should be able to increase the patients’ influence, but it should also be possible to improve other stages in the process by making use of the patients’ knowledge.

RECOMMENDATIONS

From the patient’s perspective, actions need to be taken that will ensure that the areas that should be ones of national specialised medical care actually become this. The relevant areas need to be identified for examination. These should then be investigated carefully, though also reasonably quickly and effectively. Finally, a decision must be made and followed up. All of these stages can be improved. From a patient’s perspective, it is also important to ensure that healthcare chains in national specialised medical care work properly. Finally, an urgent issue is for patients to be involved to a greater extent – and in a more systematic manner – in the work being done on national specialised medical care. In view of this, the Swedish Agency for Health and Care Services Analysis (Vårdanalys) makes the following recommendations:

  • The Swedish National Board of Health and Welfare should draw up a more analytically based approach in order to identify systematically the activities that should be carried out as national specialised medical care.

The approach taken to identifying the activities that should be examined for national specialised medical care ought to proceed from a more analytical and fact-based starting point. For example, this could be based on an analysis of procedures or activities that apply to fewer than a specified number of patients. It could also be based on a continual analysis of how the quality of healthcare in highly specialised activities compares between Sweden and other countries. Other approaches, too, may be appropriate. The key point here is to start with an analytical, fact-based approach applied at national level. There is nothing to stop the current system of nominations being used as a complement to such a process.

  • The Swedish National Board of Health and Welfare should strengthen its capacity for inquiry in the field of national specialised medical care. This includes enhanced medical and healthcare expertise

This work has been started by the Board with the hope of achieving an organisation that can work more efficiently and quickly.

  • The Swedish National Board of Health and Welfare should consider creating the option of awarding more than two licences per area of activity

There may be reason to open up the option of giving out more than two licences per area of activity. The current system risks creating vulnerability. This can lead to sub-optimal use of expertise in Sweden.

  • The Swedish National Board of Health and Welfare should intensify the monitoring of national specialised medical care.

The authority needs to draw up a monitoring process that can be initiated right at the time at which a decision is made to grant a licence. This would facilitate monitoring and analysis, as well as the collaboration with other “centres of expertise” in Sweden and abroad, keepers of quality registers, and patient associations.

  • The Swedish National Board of Health and Welfare should involve patients more clearly in the work being done on national specialised medical care

Patients are a resource with unique knowledge of their illness and healthcare. For this reason, the referral process and other patient involvement should be guaranteed in order to achieve an equal inquiry process for all types of areas of activity. Patient associations and medical specialist unions should also be given the opportunity to take part in designing the criteria that will need to be met if a hospital is to be a candidate for national specialised medical care. Generally, national specialised medical care should work to strengthen the patient’s perspective through increased involvement of patient representatives. It should also require that the activities that are given licences clearly take the patient’s perspective into account in the healthcare service they provide. How patients are involved in their own care should be defined during the work of the inquiry and should be one of the monitoring indicators. Patient questionnaires and other quality indicators that focus on the patient should be used to define the requirement specifications for the licences and monitoring process.

  • The Swedish National Board of Health and Welfare should take a more active role in ensuring the proper functioning of healthcare chains for national specialised medical care

The Board should set out terms for a plan in the examination of the licence application that describe how to secure collaboration between those carrying out national specialised medical care and other healthcare providers and activities involved in the healthcare and rehabilitation of the patients. There is an urgent need to promote functioning healthcare chains and a dissemination of knowledge among the various healthcare players involved in looking after the patient. If the decisions on national specialised medical care cover only part of the healthcare chain – for example, a surgical procedure – the intentions with regard to ensuring cooperation with the patient’s local county council in order to secure good aftercare must be clearly described in the plan. The expert groups involved in the inquiries should provide better cover of the entire healthcare chain and should include other professions as well as just doctors.

  • The Swedish Government should monitor developments in national specialised medical care more closely

The Government should take appropriate measures to monitor more closely the Swedish National Board of Health and Welfare’s work on the development of national specialised medical care. It would also be appropriate to monitor the overall reform regarding national specialised medical care and the activity’s fitness for purpose over time.