The HOPE Exchange Programme period for 2019 starts on 6 May and ends on 4 June 2019. It consists in a 4 week training period aimed at professionals who are directly or indirectly involved in the management of European health care services and hospitals. The HOPE Agora will take place on 2-4 June 2019 in Ljubljana, Slovenia and will discuss “Evidence-informed decision-making in healthcare management”.
HOPE is representing its members in the European arena covering all policies with an impact on hospitals and health services. HOPE contributes to the legislative agenda but also to the non-legislative activities in particular through participation in European projects and joint actions. Since its creation HOPE has produced comparative information on the ways healthcare systems are organised and financed. It includes as well a unique annual exchange programme for health professionals, together with study tours, workshops and conferences
Patient orientation is essential to make efforts to improve quality of care. Active participation, however, requires a certain degree of personal competence and responsibility. Thus, in order to empower people to be actively involved, strengthening the health literacy of the population and vulnerable groups by appropriate measures is a declared common goal of the health reform partners over the next four years. The measures envisaged include the enhancement of independent information in the internet health portal on health and diseases as well as on possibilities of healthcare provision, on available evidence of treatment options and on the functioning of the healthcare system. Additionally, there will be standards developed on how written information on health issues can become most clearly understandable. Healthcare providers will be trained to improve their communication skills. It was also agreed to continue the regular cross-sector surveys on patient satisfaction with the service provision in the healthcare system. The survey captures the patients’ experiences on care processes and if repeated on a regular basis allow for the monitoring of services and the evaluation of improvement measures set. Patient experiences and opinions thus become the starting point for quality improvements and for the optimisation of patient pathways in the healthcare system.
Improving the quality of healthcare using the experiences and competencies of patients is a central feature of the Danish approach. Patient safety is one of the eight national targets. Some examples of initiatives implemented in this regard are the use of patient-reported outcome measures (PROMs) and of surveys on patient satisfaction covering many areas of the healthcare sector such as emergency care, psychiatry and maternity wards. Better continuity of care and improved patient involvement are two further national targets. It is common understanding that the improvement of results for patients is the core of our daily activity. It is not as simple to accomplish it as it sounds, but the dedication is there. By keeping a close eye on the development within the targets we believe, we will come far along this new path.
Patient-centred healthcare has been discussed and developed in different medical areas in Estonia for many years. It improves the quality of treatment, has a positive effect on patient health and increases his/her satisfaction with treatment. Patient-centred healthcare is the way to a fair and cost-effective healthcare system. Globally, health systems in are under pressure and cannot be sustainable if they continue to focus on diseases rather than patients. They require the involvement of individual patients who adhere to their treatments, make behavioural changes and self-management. Patient-centred healthcare may be the most cost-effective way to improve health outcomes for patients. To make this happen, all stakeholders in the healthcare field, including the patient, must change their attitudes and behavioural patterns. The patient takes responsibility for self-educating about different treatment options, participates in choices and follows the agreed treatment, changing the attitudes and behaviour accordingly. The Estonian Ministry of Social Affairs started a Patient Safety Development Initiative, dealing with the main issues related to patient safety, the green paper on quality and the Patient Insurance Act. Currently this act is in the development phase. The aim is to reduce the risk of doctors’ fear of potential legal liability to a minimum, which would enable them to focus more on patients’ effective medical treatment.
In Finland, the patient orientation is highlighted in healthcare planning, implementation and evaluation. Patients have been involved as experts in government working groups. The development of healthcare and social welfare provision will be based on patients experiences and participation. One of the government key projects is the establishment of a model based on expert experience and patient involvement. In Central Finland Healthcare District, forms of co-design have been developed in specialised medical care, primary healthcare, social welfare and municipal welfare work. The aim is to increase patient and citizen participation in planning, preparation and evaluation of healthcare services by collecting feedback on their experience. A model of co-design for patient-driven self-management of noncommunicable diseases was developed. Observations based on expert experience in psychiatric departments were provided in 2017. In Satakunta Hospital District, a patient panel participated in the planning and construction of a new hospital. The panel gathers patients’ feedback to develop services and products and to create or test new ideas. One of the government key projects is the development of virtual hospital services. Finnish university hospitals are building a joint national virtual hospital, which means a digital service hub for specialist healthcare. It aims to develop patient-oriented digital healthcare services for citizens, patients and professionals. The project, which runs from 2016 to 2018, is a joint initiative coordinated by the Helsinki and Uusimaa Hospital District HUS. In developing digital healthcare services, the patients and their needs define the core of the service and the value chain that is built around it. In the Virtual Hospital 2.0 project, the patient’s voice has been affirmed in such a way that the current e-service development model brings patients, their close friends and patients’ organisations into service planning and design. Inclusion methods are based on patients’ interviews, service design workshops, participation at working groups, and patient relationship management. The service design also includes experienced experts, peer educators, and specialist patients’ organisations.
Despite the efforts of the Health Ministry, Sickness Fund and HAS, in the implementation of programmes relying on penalties, success remains somewhat limited, in large part because of a lack of appropriation by front-line clinicians. The approach adopted is ‘top-down’. Since 2015, the French Hospitals Federation (FHF) is part of ‘Choosing Wisely’, an international campaign launched in the US and Canada, which aims to improve the dialogue between patients and clinicians on the topic of relevance. Since 2017, the FHF is the national leader for this campaign. Learned societies as well as patient associations have since then started working on ‘Top 5’ lists. A national logo has been created, and the construction of a website is under way. The lists will be displayed on the website and will be accessible by providers and patients alike. One of the first of these lists, concerning geriatrics, has been tested in all the hospitals of the Region of Brittany, and three of the five items have shown their relevance and robustness. Work has been undertaken to improve the quality of recommendations and their understanding by patients. The FHF provides technical support in the process and helps to create consensus regarding the items that will constitute the Top 5 lists. A national advertising campaign will be launched in hospitals as well as in non-hospital settings in GP’s offices. Around 20 learned societies are already part of the campaign. The FHF is also working with the Deans of Medical schools to introduce ‘Choosing Wisely’ in the medicine curriculum, as well as to organise activities around this theme involving French and foreign students. In 2017, UNICANCER launched a project that aims to facilitate the communication between cancer patients and their healthcare professionals. The idea of the initiative is to set up a digital tool, collecting data on the patient experience on consultations during their treatment for cancer. The survey has met with good success, from the perspective of both patients and doctors, allowing the patient experience to be brought to light to help medical decisions. The project will be extended to further comprehensive cancer centres that volunteer to participate.
Hospitals are conducting voluntary patient surveys aimed at collecting feedback on their experience concerning all aspects of their stay (for example, personal satisfaction with admission procedures, information and communication by the hospital, accommodation, quality of the staff or of the catering, waiting times and hygiene). In certain circumstances, these interviews are also addressed to the relatives and partners of patients. Some of these surveys are also used for benchmarking. In addition to this voluntary assessment of patient satisfaction, hospitals are asked to question patients on different services by the Federal Joint Committee as part of the mandatory quality assurance system on the basis of an interview form developed by the IQTIG. German hospitals also have patient advocates who assist patients in representing their interests. Acting independently in the hospital they moderate between healthcare providers and patients. As this option was given by law, some Federal States have already developed recommendations for them, providing both framework and contents for their duties and rights. Additionally, hospitals have for some time also applied complaint management systems. They provide options for patients to complain anonymously about all aspects of their treatment. This feedback delivers valuable information for hospitals on how to improve services.
Inpatients participate in a pre-organised and personalised counselling session before they leave the hospital. The person who is responsible for this tailored service has to be sure that the patient has understood all the advices regarding healthy living, physical exercise, physiotherapy, diet, and use of medical devices. Patients are free to ask questions. Healthcare providers have to certify all these aspects in the final report. Hospitals operate a well organised system for the management of patients’ complaints and comments. Several staff members are involved in the investigation of complaints. However, it is the managing director who makes the decision. There are independent patients’ rights commissioners in each hospital, representing patients’ interests in problematic cases and supervising the fairness of the investigations. The leadership looks into all the complaints annually and suggests development measures when needed. Hospitals run their own web pages, which aim to provide information but also work to receive information and feedback from the patients.
Using patients’ experiences and competencies along with other components such as effectiveness and safety of care are essential for providing a complete picture of healthcare quality. This is helpful to get a better patient compliance in the treatment: listening to patient experience is important for providing an effective and anticipatory guidance to establish a health maintenance and management plan to promote health and to prevent potential problems. This means, also, that the patients (or designee) are recognised as a source of control and a full partner for providing compassionate and coordinated care based on patient values, needs and preferences. Moreover, it is important considering several aspects of healthcare service provision that patients value highly such as: getting timely appointments; providing easy access to information; providing good communication between staff, patients and caregivers. In Italy, patients’ representatives are involved in many working groups and/or projects such as pain free projects, specific disease projects (for example, diabetes treatment), health promotion projects and waiting list working groups. The aim is to create an appropriate health culture, which is very important considering the potential overexposure of patients to health information that is often fake news.
The main expectations on improving the quality of healthcare using the experiences and competencies of patients are: to improve patient’s literacy on safe delivery of care; to increase the participation of patients in the healthcare service provision, as an active team member; to improve safety culture in the healthcare institutions.
In Slovenia there is a big gap between expectations of the population regarding healthcare services and the possibility of public financing to assure those services. The results of this gap are very long waiting lists and waiting times for specific services. Emergency care is provided immediately. For all elective services, regardless if they are needed with urgency, the providers (hospitals) cannot assure them in reasonable time. Spine surgery represents one of these cases. Waiting time for service differs among hospitals and varies from six months to more than two years. It is a reasonable expectation of patients and healthcare providers that government should address its resources (financial and human) to decrease waiting times. Since public opinion is that providers are responsible for waiting times although these are actually caused by a lack of resources, hospitals also expect that Government would accept the responsibility. The other expectation of the providers is to start to rebuild a ‘non-blame culture’ because the trust between patients and providers is at its lowest-ever level and consequently it is very hard for healthcare professionals to work in such circumstances. In the past in the University Medical Centre of Ljubljana, there was a board of patients nominated to improve the management of processes, taking into consideration their experiences. This is a good example of patient empowerment.
The “Spanish Network of Health Schools for Citizens” provides patients, family members and caregivers with a source of information and training services, giving them access to the best scientific evidence available. It is based on the contributions of various schools and projects within the National Health Service along with the Citizen Training Network of the National Health System, the Ministry and the Foundation of Health and Ageing of Autonomous University of Barcelona. It also receives contributions from patient and professional associations. The European Council and the WHO World Alliance for Patient Safety stress the importance of the engagement of patients and their relatives in the improvement of healthcare safety. Many initiatives have been studied to support patient engagement and to face this challenge. Nevertheless, the role of patient as auditor of safety practices remains almost unexplored. It consists of voluntarily and anonymously tracking clinical practices. Some of the suitable practices in which to engage the patient as auditor are those that require an external observer (hand hygiene, patient identification, transfusion, chemotherapy administration, etc.). The adherence to those safety practices cannot be measured by analysing data gathered through the information system. For example, it is possible to detect a wound infection but not if the healthcare professional washed his/her hands before or after the contact with the patient. The role of patient as auditor does not imply that he/she takes an active role reminding the healthcare professional to follow a safety practice. It requires the patient to assess if the professional follows the procedures in normal conditions. To explore the feasibility and validity of patient participation as partner in the audit of safe practices, the Navarra Complex Hospital is performing an innovative project composed of several stages. They are developing some learning materials while evaluating the feasibility and validity of the patient as auditor. Furthermore, they are exploring the experiences and perceptions of patients, professionals and managers about the role of patients as safe practices auditors.
SALAR strongly believes in the involvement of patients and their relatives as active partners in the planning, implementation, development and follow-up of healthcare operations. Today, better educated patients want to be involved – and should also be encouraged to get involved – both in their own care process and in the operations in general. Patients and relatives have lots of experiences and competencies that the health systems should take advantage of and use in the designing of health services. By using patients’ knowledge, views and experiences at both individual and aggregated level, the healthcare services can be improved. In Sweden, this is done through national patient surveys, patient involvement in decision making and regional patient advisory committees. We believe in a relationship between healthcare professionals and patients that encourages feedback and patient responsibility for health prevention, medical treatment, diagnostics, monitoring, and self-reporting of health data. We can see a lot of benefits having more motivated and engaged patients with increased understanding, and by that being able to have a more open dialogue with the healthcare professionals. We also expect patient participation to contribute to better patient safety and improved healthcare quality. Making the patient an integral member of the team, contributes to new progresses in the fight against adverse events. All national quality registries have PROMs, and all registries also have patient representatives in the steering committee. One way to encourage patient participation is to develop and invest in new digital solutions. New digital tools can give people more influence, and also greater opportunities to take responsibility for their own healthcare. SALAR is involved in the management and development of the Swedish nationwide web portal 1177.se, which purpose is, among other things, to improve access to correct scientific health-related information and increase health literacy, but also to facilitate patients’ access to their own electronic medical records.
Patient involvement is not an end in itself. It is a promising way of increasing patient safety by making use of knowledge and experience of patients. After all, patients view situations from a different point of view and they are the only ones who complete the entire care process. This approach is an essential addition to your own perspective. We believe the patient should be actively and systematically involved when drafting, executing and evaluating patient safety policy. Patient involvement is one of the basic demands in the Safety Management System.
Patient involvement and experience are built into the NHS national contract and so must be included in hospital’s quality plans at a local level. They are also built into the competency frameworks of local commissioners (CCGs). In addition, the quality regulator, the CQC, recruits members of the public to act as “experts by experience” as part of their inspection regime. These individuals may use health services themselves, for example those in the early stages of dementia, or with a learning disability, sensory impairment or mental health condition. They may also be carers for people who use health services. Children and young people who use services and those who have recently used maternity services are also encouraged to get involved. Experts by experience attend inspections of health and care services, talking to staff, patients and families and observing how services are delivered. Their feedback is then used to support and inform the judgements of inspectors. Patient involvement is part of the CQC framework for assessment, so these inspections will also be looking at how effective the organisations they inspect are at involving patients. Another organisation that seeks to use the experiences of patients to improve services is HealthWatch. They act as a “consumer champion” for health and care services to help ensure that patients’ experiences are heard and used to influence those with power to implement change. The NHS in England runs a number of surveys including the friends and family test (REF) which assesses whether patients and staff would recommend the institution to their loved ones. Independent of government but now well used within the NHS are various means of collecting contemporaneous patient feedback. The company Iwantgreatcare.com enables patients to rate their doctor and also operates in hospitals with patients able to comment on nursing and other aspects of care. There has been some resistance from the medical profession to certain aspects of this very public form of assessment, but the direction of travel is clearly towards greater transparency about the performance of both individual professionals and the institutions and systems in which they work.