5. strategic conference Value of innovationContinuing insufficient role of data in deciding on innovations in healthcare, with more than enough arguments in favor
Ljubljana, 11 October 2016 – The development of policies in healthcare and decisions on the inclusion and financing of innovations should be supported with evidence in all areas to assure sustainability and quality of the healthcare system and based on coordinated data collection between all institutions and the findings should be made available to a wider audience, including healthcare service users.
Demographic indicators and increasing disparities between needs and available financial resources are one of the key challenges of healthcare politics. The fact that current finances no longer suffice for all available healthcare technologies, let alone the coming ones, has been the reality of our healthcare system for some time. It is therefore more important than ever for decisions to be deliberate and adopted on the basis of different data on their effectiveness and the economy of their introduction in the widest sense. At the 5th Value of Innovation Strategic Conference that took place today in the hall of the National Council of the Republic of Slovenia, developers of healthcare policies, representatives of institutions involved in data collection, keeping and processing and patients or civil society agreed that there is sufficient data available in the form of studies and registers in certain areas, but that there is plenty of room in other areas for improved monitoring of treatment outcomes and thus more deliberate further decision-making.
The first speakers to offer their view of the collection and importance of data in deciding to introduce and finance innovations in healthcare were President of the National Council Mr. Mitja Bervar and Chairman of the Committee on Health Mr. Tomaž Gantar. In his introductory speech, the President of the National Council emphasised the importance of information as the basis for the development of fundamentals for further decision making, whereby good quality and timely information is of key importance to assure that healthcare politics do not lose their effectiveness or degrade into conflicts. Regarding the role of the National Council in this process, Mr. Bervar said that practical experience shows the Council as an organisation with close ties to civil society. Chairman of the Committee on Health Mr. Tomaž Gantar believes we have finally reached a point where we need to decide how to proceed in the future and find solutions for the current state of the healthcare system so that we can take the same pride in the results as we do today over the coming ten or fifteen years. Of course, this requires increased investments, in part due also to increased numbers of patients with non-infectious illnesses.
State Secretary at the Ministry of Health Ms. Sandra Tušar stated that evidence, data and correct methodologies bring rationality, consistency and enable a systematic approach to the decision-making process and policy development in healthcare. As Tomaž Gantar before her, she too touched on the fact that the decisions made today will have a great impact on the health parameters of the future. It is therefore prudent to approach every decision making process with the question of which evidence to use and when to include it into the process. Ms. Tušar also mentioned the fact that there is plenty of data being collected in different fields within healthcare, but the links between them is far from optimal. According to Ms. Tušar, the Ministry is open for suggestions that would improve the process of linking together various databases. In the introduction of Health Technology Assessment elements into the decision-making processes, the Ministry of Health sees itself in conjunction with the National Institute of Public Health as the body coordinating different stakeholders involved in the process.
Mircha Poldrugovac from the National Institute of Public Health brought forth the importance and methodology of bringing various stakeholders into the discussion. The process of evidence supported decision making has a tendency to degrade into confrontation, a debate instead of the necessary dialogue. He emphasised the opportunity offered by EVIPNet (Evidence-informed Policy Network) for strengthening knowledge transfer mechanisms and promotion of evidence supported decision making along with the potential the bridging of the gap between researchers and decision makers could bring. All with the goal of creating good quality and useful starting points for the decision making process.
The role of patients is becoming increasingly desirable and accepted in the (collaborative) decision-making, but the voice of civil society is often ignored in practice and, in terms of providing different data, often also undervalued. Matija Cevc, President of the executive board of the network of non-governmental organisations in public healthcare 25 x 25, sees the role of non-governmental organisations in providing suggestions to decision makers, establishing dialogue and exchanging best practices. Optimal patient advocacy also requires access to data and findings. According to Mr. Cevc, the data platform exists, but one needs to be an expert in order to gain anything from the data as it is heavily fragmented. Truly accessing the data also requires certain specialised skills, so patients are hardly able to use them.
Guests of at the round table discussion, including Stanislav Primožič from the Public Agency for Medicinal Products and Medical Devices and Marjan Sušelj, acting Director of the Health Insurance Institute, agreed that plenty of data is already available and much more could be monitored, but the main challenge remains the connectivity of varying data. All participants expressed a hope that the introduction of HTA elements into the decision making process will optimise the exchange of information. The European Union requires all member countries to establish a body for the evaluation of healthcare technologies and its inclusion into the European network, but as Stanislav Primožič emphasised, the question of who will take over and manage the implementation of HTA at the national level remains open. Participants at the round table agreed that the range of innovations in healthcare will continue to grow, but the needs of insured persons are growing much faster than the abilities to introduce new healthcare technologies, particularly with the limited budget available for their inclusion into the public financing scheme. According to Tomaž Ganter, other more pressing issues are currently moving the discussion on the introduction of innovations further into the background in spite of evidence and arguments between decision makers.
Professor Nils Wilking from the Swedish Karolina Institute presented the newest report and overview of the treatment of cancer patients across Europe and in Slovenia and a comparison to the prior report. It is interesting to note that in spite of a 30 percent increase in the occurrence of cancer in Europe between 1995 and 2013, the introduction of new therapies led to an increase in mortality of only 11 percent while also extending survival. On average, the costs of cancer care and treatment remained at the same level at 6.7 percent of total healthcare expenditures. Mr. Wilking’s report also notes on differences in access to medicines and therapies in various countries and supports a well planned and transparent collection and processing of data on incidence and treatment outcomes. The field of oncology is growing ever more complex due to the introduction of new healthcare technologies, so permanent solutions must be found for its financing with the cooperation of all stakeholders in order to assure sustainability.
Data being collected by various public institutions, programs, studies and trials and through civil society structures is an excellent and necessary source of information for forecasting trends and reviewing of evidence on the effect of individual innovative therapies, thereby allowing for efficient and well substantiated introduction of innovations into the healthcare system with regard to limited resources. However, certain steps should be made towards better possibilities for linking data with a view to improve transparency and quality and such steps require accurately defined roles and competences, as well as a common will and use of modern technologies.
Maintaining a focus on evidence can assure the introduction of appropriate organisational, technological and other innovations. Access to appropriate data and information maintains access to high quality and effective treatments and reduces costs in the system that often occur due to arbitrary decisions and resistance to the introduction of new solutions. Innovative medicines and other innovations in healthcare have an important influence on the quality of life of patients with formerly untreatable and unmanageable illnesses, they extend life expectancy and quality and reduce direct and indirect costs of society in the mid and long term. But only if patients and healthcare workers can actually access them.