Questions & Answers
Health outcomes are changes in the health of patients that occur as a result of health care. They include clinical measures of treatment success such as mortality and survival, quality of life that is commonly monitored through care outcomes reported by patients (symptoms, pain, mobility, ability to perform daily activities, etc.).
In health care, these are institutions that, among other things, record excellent results in treatment outcomes in certain therapeutic areas. In Croatia, according to a recent Ipsos survey, 9 out of 10 citizens said they were willing to travel outside the place of residence for several hours to get better care in an institution that has better treatment results. Centers of excellence are just that – institutions that combine a high level of expertise of employees, as well as technology and other resources needed to treat a particular disease. This makes them desirable for a larger number of patients, to whom a multidisciplinary team specialized in a particular disease is dedicated, and based on further monitoring of treatment outcomes, health processes are further optimized and the quality of health care is raised.
Outcomes reported by patients are increasingly recognized as the most important indicator of treatment outcomes. If we want to provide services that meet the needs of patients, we must necessarily consult them on satisfaction with both the treatment process and health outcomes. Information of this kind is collected through surveys. Patient Reported Outcome Measures include treatment symptoms (e.g. pain and fatigue), and quality of life measured through functional abilities such as mobility, psychological state (anxiety, depression), ability to perform daily tasks, return to work etc. Patient Reported Experience Measures include patients’ attitudes about service availability, care coordination, satisfaction with information about diagnostic tests and procedures, and whether they felt involved in making treatment decisions.
In Croatia, as in the rest of Europe, citizens finance health care. As funders, but also as beneficiaries, they have the right to information about the treatment results they can expect if they need health care. Disclosure of outcome data can enhance administration accountability, encourage quality improvement, improve the health literacy of the population, and facilitate the choice of physicians or hospitals by patients. It can also enable the identification of places where insufficient quality care is provided, and initiate mechanisms to correct this.
The structure of health systems varies greatly from country to country, as do treatment guidelines (which do not exist in some countries), available therapies, and consequently both the quality and outcomes of treatment vary.
Monitoring health outcomes requires certain investments in health informatization. However, better availability of quality data on care and outcomes will allow for rationalization of treatment and focus on effective treatment methods, which should result in significant savings. For example, conservative OECD estimates say that up to 20% of health spending is wasted on less effective or even harmful therapies. In Croatia, this would amount to approximately HRK 5 billion per year.
The method of collecting data on outcomes has undergone a major change over the years. In the past, it has involved considerable administrative effort to record a large amount of patient data in a separate database. Today, due to computerization, most data is collected automatically with minimal involvement of doctors and nurses.
The effort that healthcare professionals invest in monitoring treatment outcomes is of immense importance, both for patients and institutions, and for healthcare professionals themselves. Monitoring outcomes provides a clearer insight into existing quality of the system, its parts and individual processes, and it is easier to start mechanisms to correct possible shortcomings.
Outcomes monitoring results can be used to optimize the treatment of new patients practically as soon as we start collecting them. The whole concept is dynamic and the basic idea is that the treatment is continuously adjusted and improved in accordance with the results and new possibilities.
Yes, some medicine could be removed from the list if it turns out that in real life they do not give the results predicted by clinical trials. The patient directly benefits from this, as his treatment will focus on the therapeutic options that show the best results.
The severity and complexity of the disease are taken into account in the analysis so as not to compare “pears” and “oranges”.
Conference Questions & Answers
What do you think about centres of excellence for certain rare cancers (brain cancers) that would form across Europe? This would combine knowledge, technology and experience, facilitate treatment abroad and improve treatment outcomes. The problem is the most medical institutions usually treat all. What about the inclusion of complementary cancer treatment?
Concentrating complex care in centres of excellence makes sense in terms of quality and health outcomes. In addition, it increases health system efficiency and favourably impacts costs. This is common knowledge today, even though it is not yet vigorously implemented in a number of countries. Measuring and publishing health outcomes will contribute to faster implementation of health system reforms by providing additional arguments on why and how they should be undertaken. International centres of excellence for very rare conditions will play an important role in this process if we want to improve the way in which we care for these patients.
Is there a possibility to make the onco registry available online? This would make it easier for us to act due to possible comorbidity in patients.
In Croatia currently not, due to both administrative and technical obstacles. However, current plans for the development of the national health care IT system do foresee improved communication between health system stakeholders so should allow for this feature also.
How far is possible, in order to improve treatment outcomes, expect some kind of consensus on the need to support the establishment and maintenance of virtual clinics and for telemedicine early communication and possibly consortium-assisted diagnosis and monitoring, in order to achieve targeted EU support and reduce West and East disparities?
Many European countries are initiating telemedicine projects to improve care and access to care, and the Covid-19 epidemic has in particular demonstrated their potential in this regard. While most of these initiatives are national, there are plenty of examples involving international cooperation also, some funded through EU funds.
There are other factors that can affect the wellbeing of cancer patients/survivors, such as finances, employment, care for dependents, etc. How are these adjusted for measuring patient-reported outcomes? The health gap in Europe is huge, not just between East and West, but within countries and within cities of single countries. Also, there is a learning curve from reporting and collecting of data to analysis, and finally using data for action.
Indeed, these factors have a profound impact on quality of life and should not be overlooked. Their collection and reporting will allow for better informed patient participation in deciding on treatment options and planning therapy.
Joint Public procurement in healthcare has been brought out many times as one of the remedies for curing insolvency of hospitals and costs management improvement. So far, we have seen public procurement carried out based only on price without consideration what may be the impact of procurement subject on clinical outcomes short, medium and long term. How and when Croatian healthcare administration plans to address this and direct/lead change of approach from price-based to value/outcome-based?
Joint public procurement is a reform that can bring about substantial savings through standardization and bundling of purchasing and subsequent economies of scale without negatively affecting health care benefits provided to citizens or jeopardizing the quality of care. During implementation, it is important to keep in mind not to narrow the therapeutic options so that all patients can receive those products and medications that will help them in the best way. The anti-corruptive element of the reform should also not be overlooked. As centralized procurement increases, the transparency of purchases by making them more visible and easier to monitor and control, it lowers the risk of misconduct. Croatian legislation (based on the relevant EU directive) foresees the use of the economically most advantageous criterion as mandatory in awarding contracts.
COVID-19 had impact on economies and budgets dedicated to healthcare, especially if they are collected through taxation system (related to employment). Will this have impact on delayed access and reimbursement of new therapies around EU, no matter that they bring much better outcomes? How patients can be sure they will have best possible treatment, despite COVID impact?
The Covid-19 epidemic has negatively impacted economies across Europe, but it has also very clearly demonstrated the importance of adequately financing health care systems. Most of us will agree that health budgets should be the last ones to be reduced, including those used for ensuring access to effective innovative medicines. On the other hand, we can expect greater scrutiny in the health technology assessment of new treatments to ensure value for money. Monitoring real world evidence (including on outcomes) should be a way forward.
Do we have a comprehensive registry in Croatia to be able to know:
- the number of patients with particular diagnosis
- keep and overview of treatments and how patients responded
- number of deaths in particular departments in particular hospital over the weekend?
Currently these data are not available in Croatia, and this should be urgently addressed to allow for informed decision making and planning meaningful health reforms.
For past couple of years, we have talked a lot about implementing universal registries for treatment outcomes in hospitals in Croatia – what is the prediction – when will they be available in hospital online databases?
There is wide consensus in the country that measuring and publishing health outcomes in Croatia is a critical step in improving our health system. Health system decisionmakers will have accurate and timely information on performance. Doctors will receive feedback on their treatment results and patients will be better informed about their options and prospects.
How are patients involved in Croatia or elsewhere in defining their treatment choice and path?
Patients should, of course, be actively encouraged to participate in these decisions. We need more research to better understand to what extent this really occurs in Croatia and what we need to do to improve. Recent research shows that it is necessary to work on health literacy in Croatia and empowering patients, which will give them the knowledge and strength to actively participate in treatment with their medical team and shift from an object of treatment to a subject.
A question from our patients: we are excited about innovative medicine, however what is EU doing to make essential generic drugs in oncology-hematology available to every and each patient in Europe?
EU Commissioner Kyriakides (responsible for Health and Food Safety) has on December 2019, at the European Parliament, stated the following: It is unacceptable in a European Union that seeks to represent all of its citizens, wherever they live in the EU, whatever their age, gender, or socio-economic background, that access to care is not equal for all. Member States, the pharmaceutical industry, payers and healthcare providers, patient advocates all have a huge role to play here. This provides hope that the EU will swiftly act in this direction.
How can nurses be involved in treatment outcomes?
Nursing care is instrumental in achieving quality outcomes for patients, families, and communities. As nurses are an integral part of health teams, as such they need to be included in all efforts targeted at improving treatment outcomes. Effective treatment today requires a multidisciplinary approach and involvement of professionals from different fields, which of course includes nursing.