Programme 4D bridging the gap between healthcare and research Position Paper Programme 4D is a Swedish collaboration between
Table of Contents 1. Programme 4D in brief 3 2. Background 4 New opportunities for individuals, healthcare and research 4 3. Programme 4D four diagnoses and informatics 5 Four diagnoses four prevalent diseases 5 Information transfer is the key 5 4. Programme 4D aim and objective 6 Value for stakeholders 7 Value-based healthcare for the individual 10 The role of biobanks 10 5. Programme 4D meeting place for knowledge building 12 Results and innovation 12 Project status March 2015 14 Data becomes information that enables collaboration and knowledge building 17 Collaboration with other initiatives 18 6. Would you like to learn more about 4D? 19 2
1. Programme 4D in brief Programme 4D ( D as in diagnoses) is a collaboration programme between Karolinska Institutet (KI) and the Stockholm County Council (SCC). The aim is to improve conditions for healthcare and research to enable the rapid transfer of knowledge to personalized prevention, early diagnostics and treatment. The objective is to design generalizable models suitable for the majority of diagnoses. The programme, which extends over the period 2012-2017, is intended for subsequent wide implementation in healthcare and research. The four diagnoses were chosen based on their high prevalence and health impact: arthritis, breast cancer, diabetes type 2 and heart failure. Programme 4D also includes a separate project for informatics to enable the linkage of medical records, patient e-health accounts, quality registers and biobanks. The programme is thus composed of five main projects, which in turn include approximately 20 sub-projects. One of the basic ideas of Programme 4D is the sharing of information from different sources to increase knowledge and participation, making it easier for Stockholm County residents, patients and their families to take part in and manage their own health and medical care. It also improves options for transferring information from healthcare to research, thereby promoting new knowledge. This can be achieved, for example, by using information from healthcare data, quality registers and biobank samples, and patients health self-assessments. This knowledge will be applied from research to the healthcare system in the form of new or improved treatment, prevention or diagnostics. Several research projects are linked to Programme 4D. Aimed at bridging knowledge gaps, these projects include a study of the distinction between two types of heart failure and an evaluation of three different methods for population screening for pre-diabetes and diabetes type 2. New systems for identifying and diagnosing people with newly onset arthritis are being developed. In addition, a risk model for identifying women who may develop breast cancer will be created and tested, as will a breast cancer prognosis evaluation protocol. The ambition of Programme 4D is to increase the cooperation between all participants in the health and medical care process. 3
2. Background New opportunities for individuals, healthcare and research The healthcare system is facing major challenges. Statistics Sweden estimates that Sweden s population will exceed 10 million by the year 2017 and reach 11 million by 2037. Sweden s ageing population is another challenge for health and social services. Because people live longer, the incidence of age-related diseases will increase. Many healthcare workers are approaching retirement age, which may lead to a shortage of personnel. The situation requires a concerted action by the healthcare system and the development of preventive interventions, healthcare services and clinical research. Today s patients are more knowledgeable and wellinform ed, with many people taking more responsibility for their own health. It is increasingly common for people to seek out information on diseases in preparation for their healthcare visits. In these circumstances it is important that people have access to research-based knowledge. One crucial task is therefore the creation of evidence-based models for prevention, diagnostics, treatment and the follow-up of results and treatment outcomes. The expectation is that these models will promote personalized care and improve conditions for collaboration between healthcare, research, industry and the patient. Individuals can contribute to the information pool by, for instance, consenting to have their samples saved in biobanks and used in research. This enables the development of new diagnostic and treat ment methods based on analyses of health data, tissues and blood. Sweden is unique in its long history of storing patient data in healthcare data bases and registers that are used in research. There are now also quality registers for patient data which, like the healthcare data bases, can be linked to biobank samples. This is a significant opportunity that can drive development in Sweden as well as internationally. 4
3. Programme 4D four diagnoses and informatics Four diagnoses four prevalent diseases Arthritis, breast cancer, diabetes type 2 and heart failure present different medical needs and challenges on a patient s journey through the healthcare system and re search process. The intention is to apply the new knowledgebuilding working methods and models created within Programme 4D to a greater number of chronic diseases and to implement these with a larger group of individuals and patients, including strategies for prevention. Information transfer is the key The documentation of patients samples and treatments within these four diagnoses generate extensive amounts of data everything from information from patients medical records and self-reported data to information from blood tests for genetic analyses and protein patterns. The management and analysis data from all the Programme 4D information sources is the fifth project, informatics. With improved information systems for health and medical care, information from different sources (eg, patient medical records, e-health accounts, quality registers and biobanks) can be linked more smoothly and used to streamline the work of all parties involved. This covers both healthy individuals and those who are ill, all types of care providers and research units. Individuals therefore also have greater opportunity to gain knowledge about and actively manage their own health and participate in research. This knowledge is then reapplied from research to the healthcare system as a basis for screening, prevention, early diagnostics or treatment. Conversion of the information transfer into knowledge and generalizable models requires structured healthcare data and a systematic procedure for gathering data. Here, web-based form input can simplify systematic medical record entries. Knowledge for implementa0on Health and medical care Knowledge bank Personalized preven0on Symptom Tests Biobank Consent Diagnosis Therapy Clinical trials Follow- up Biobank Research - development Evalua0on Quality register Health care decision support system Pa0ent decision support system Research support Quality registers (pa0ent data) Biobanks Knowledge for implementa0on Systema0c data collec0on and analysis enables knowledge building Programme 4D s strategic objective is based on the individual s journey through the healthcare system and research process. Information is collected, shared, processed and integrated into the development of new methods. The knowledge-building process is under continuous development. 5
4. Programme 4D aim and objective The overall aim of Programme 4D is to improve the health of and increase participation of the individual. The aim is to improve conditions for healthcare and research to enable the rapid transfer of knowledge to personalized prevention, early diagnostics and treatment. The objective is to design generalizable models suitable for the majority of diagnoses. Examples of generalizable models include decision support for patients, handling of informed consent for research; participation by patients; decision support for healthcare; and support for research in the use of various types of data (eg, biobanks and quality registers). This may involve an e-health tool for the patient that links medical record data to healthcare data, thereby also serving as research data and decision data for both the patient and the healthcare system. All in all, Programme 4D will promote a cohesive health and medical care process in which the individual takes an active part. Research projects linked to 4D will identi fy and bridge knowledge gaps. The initiative will also support the development and quality of the healthcare organization as a whole and the development of innovations in collaboration with the industry. Karolinska Institutet and Stockholm County Council work with a focus to achieve common objectives by sharing leadership responsibility and a strong commitment. Improved health Increased participation Aim Objective Better conditions for building knowledge within health care and research Generic models for knowledge building suitable for most diagnoses Examples of generic models for knowledge building: - Patient decision support system - Health care decision support system - Research support (biobanks, quality registers) Summary of Programme 4D s aim and objective 6
Value for stakeholders The key to Programme 4D s success is the cooperation of all players in the health and medical care process. Individuals, the healthcare system, research and the industry work together as stakeholders and partners to achieve shared goals. Programme 4D s organization is taking advantage of existing management and collaboration forums to the greatest possible extent, for the programme as a whole as well as its individual projects. Patients and family Health care providers Clinical research Industry Better health and care Less duplication of work Access to tests and data Strengthened competitiveness More participation New treatments More power for patients Better decision material Shared knowledge bank data results in increased co-operation and higher value The above image illustrates the value generated per stakeholder group, as detailed on the next page. 7
The individual/patient has the opportunity to be more active in his or her own health and healthcare. For example: Greater freedom of choice and knowledge in terms of care and therapy. It is easier to obtain information about whether or not you belong to a specific risk group. This can be done via online screening or participation in experimental groups. People who belong to a risk group can receive medical advice on prevention. With easily accessible tools for utilizing information, the patient can take the information to his or her doctor appointment and prepare questions on treatment. This improves the patient s capacity to contribute with his or her own knowledge and experiences. Families can also be involved through increased dialogue and information exchange. With a simplified procedure, every individual can be offered the chance to participate in research projects and contribute to research. The healthcare system has better tools for collaboration with the patient and improved options for guidance and development. For example: Gaining knowledge about the healthcare system s quality and outcomes enables the development of new compensation and governance models. Involvement in the development of preventive measures, new diagnostic methods, new drugs or medical devices to better support development of the healthcare system. Improved precision in diagnostics and individual treatment e. g. a clear plan designed together with the patient for treatment, follow-up and rehabilitation. Real-time data in patient meetings on the patient s current and historical condition as well as evidence-based decision support for examination and treatment. More time for patient and care provider interaction owing to improved medical records, IT systems and patient s own participation. Coordinated management of samples and data for comparable samples. Research has access to samples and data that can be processed and used in research studies such as: Biobank samples that are linked over a long period of time (pre- and post-diagnosis and during treatment) with patient data in the quality register in order to predict the course of the patient s disease and implement personalized prevention and treatment. Genetic mapping linked to determination of protein patterns that are analysed based on knowledge of the individual s lifestyle and disease generates knowledge of disease mechanisms and opportunities for new treatment. The industry is able to cooperate more closely: Development of the healthcare system requires collaboration with companies and industry, where new products can be developed. Collaboration between patient, healthcare, research and industry creates a breeding ground for new discoveries and develops Stockholm County as a leading international Life Science arena. The industry has the opportunity to be involved earlier on in the development of preventive measures, new diagnostic methods, new drugs or medical devices, and can therefore develop products and services more rapidly. 8
Patient s journey through the healthcare system and research process At home Primary care 1177 HG Online screening 1177 HG You should see a doctor My Healthcare Contacts MHC Make an appointment Patient meeting Test results 1177 CPP Doctor s evaluation Entry medical record Biobank Referral See specialist Follow-up Electronic decision support for referrals NO YES Information to medical record MHC Make appointment with specialist 1177 CPP Basis for evaluation Diagnosis, treatment and relief 1177 CPP Evaluate treatment Decision on further treatment MHC My Healthcare Contacts 1177 CPP 1177 HG 1177 Care Provider Portal 1177 Healthcare Guide Quality register 1177 Biobank Quality register 1177 Biobank The illustration above describes a sequence of events soon to be a reality. Example: Karin has been feeling discomfort and unidentified pain for some time. She searches 1177 Healthcare Guide online and learns that she can do an online screening of her symptoms. Based on the results of the screening, she is advised to see a doctor and to have tests taken prior to her doctor s appointment. Karin uses the online system My Healthcare Contacts (MHC) to book both of these appointments. When Karin arrives at the health centre her doctor has already received her online screening results and test results. The medical record decision support system indicates whether or not Karin should be referred to a specialist. Information in the medical record is collected in the Care Provider Portal, which stores information and services for SCC care providers. Medical records are available to authorized care providers who have been granted access by the patient. Karin is referred to a specialist, books an appointment and completes a new patient questionnaire on MHC. The specialist, who has access to information from Karin s visit to the health centre and from her new patient questionnaire, is able to make a coordinated evaluation on Karin s first visit. At the specialist visit, as at the health centre, the doctor determines whether biobank samples should be taken or whether Karin is an appropriate participant for a research study. If so, Karin needs to give informed consent. All information is stored in an electronic health journal that can be shared with other involved care providers via the Care Provider Portal and also sent to the appropriate quality register (also called patient register ). Multiple tests and biobanking are valuable in monitoring the course of the disease/illness and the risk factors involved. Prior to her follow-up visit, Karin does a systematic evaluation of her discomfort and symptoms. If needed, another appointment with the specialist is scheduled. 9
Value-based healthcare for the individual Programme 4D is based on the principles of value-based healthcare. This can be defined as the value of the health and medical care to the patient s health in other words, the treatment s level of success. The outcome is evaluated in relation to the cost. Focus is on identifying improvement opportunities that can both improve quality and reduce the costs. Part of the work with value-based healthcare involves introducing health outcome measures that are specific to each diagnosis. Examples of health outcome measures for heart failure may be how far the patient is able to walk or how many times the patient is readmitted to the hospital after treatment. For breast cancer patients it may be a matter of leading a good life without recurrence or complications, or more tangible issues such as regaining full mobility in the shoulder following surgery and radiation treatment. In value-based healthcare, total compensation is given to a greater extent for all health and medical care an illness requires in relation to outcome, as opposed to the current compensation model in which compensation is often paid for a treatment s individual components (eg, lab tests, doctor visits, operations, etc.) The success of value-based healthcare is dependent on inter-level cooperation of healthcare operators and a coherent supply of information to which patients and the health and medical care system have access. Within the 4D Arthritis and 4D Breast Cancer projects, examples of new working methods with a strong patient focus are developed. The patient s healthcare process will be automatically documented with the help of an advanced description system. All healthcare contacts, activities, health outcome measures and costs are compiled in an integrated narrative that can also be used as supporting documentation for compensation. The role of biobanks Stockholm s Medical Biobank (SMB) was established in June 2014 as a collaboration between Stockholm County Council and Karolinska Institutet. SMB s function is to build an infrastructure on the regional level for the coordination and standardization of samples with associated data and to increase the collection of samples. SMB is also building a system to make samples and data available to the healthcare system, researchers and the business sector while preserving patient privacy. Modern molecular analyses of blood and tissue samples are based on highly sensitive methods for analysing genes, proteins, carbohydrates and lipids. These methods can only produce the intended results if the samples are comparable and of high quality. All 4D projects include SMB pilot sub-projects. For all of these sub-projects, it is essential that laboratory samples are collected and that sample data is made available. It needs to be available for the patient s care and treatment (diagnostics and targeted treatment and follow-up) and to meet the needs of research for samples and data for studies on the cause and progression of disease. The samples will also be of great value to the industry in developing new diagnostic and treatment methods. 10
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5. Programme 4D meeting place for knowledge building Results and innovation Programme 4D has created a meeting place for clinical experts from various disciplines (primary care, hospital care, different specialties and professions) and researchers from fields spanning basic and clinical research to health care research. The basic medical researchers who have been involved in Programme 4D have also been involved in clinical issues in a new way as they realize that this will make unique research possible where knowledge gaps are identified. Efforts have begun to create better conditions for knowledge building for patients, the healthcare system and research, and around eight of more than 20 sub-projects are being actively tested. Examples of generalizable models being developed with the informatics project are summarized below. 1. Online screening, living habits and form management. Digital tools for screening symptoms are being developed for many diagnoses. Generated data will be transmitted to electronic health journals to serve as knowledge support for patients and doctors. 2. Patient self-tests. With the help of supporting information systems and upon doctor approval, patients are given the option of doing their own referrals for lab tests. Test results are reported to the patient via My Healthcare Contacts and are simultaneously transmitted to the patient s medical record for evaluation by the care provider. 3. Management of informed consent. The more patients who contribute to research studies in a simple and practical way, the greater the knowledge base. The patient consent for biobank storage of samples and participation in research studies has increased significantly by means of a developed app accessible by tablet. 4. Biobanking. A model is being developed for the standardized maintenance, storage and collection of blood and tissue samples. The model will be applied at all involved clinics and laboratories to ensure that stored samples and associated data are comparable and available to the healthcare system and to research. Programme 4D also includes a sub-project, currently underway, to link samples and sample data to clinical data and quality registers. This will greatly simplify procedures for healthcare and research and will improve quality and security. 5. Research portal. A design process has begun to create the infrastructure needed for research portals capable of securely and systematically making large amounts of data accessible for operational follow-up as well as research. 12
All of the project groups are also working on improving and structuring healthcare processes within their diagnoses. Systematic collection of healthcare data and health outcome measures for healthcare development and research requirements are made possible through structured healthcare processes. There is a greater collaboration between research and healthcare in 4D s project groups. Among other things, the work is based on an improved healthcare structure providing a better research structure, and vice versa. The 4D Heart Failure project is an example of this crossfertilization. Without changes (such as structured medical records) effectuated by the 4D Heart Failure project within the healthcare system, parts of this research would not have been possible. The research focuses on differentiating two different types of heart failure: the enlarged heart and the small fibrotic heart. Because the disease mechanisms are very likely to be different, the two diagnoses require different treatment. While excellent treatment is available for the first diagnosis, no adequate evidence-based treatment is currently available for the small fibrotic heart. This research project therefore strives to identify improved heart failure treatment for patients with small fibrotic hearts (often women), where early onset hypertension is common. In one of the sub projects, surgeons take biopsies of patients undergoing bypass surgery, which are then studied on the DNA and molecular level to identify biomarkers for different types of heart failure. The timing of the transition from high blood pressure to heart failure is also being studied. This project is dependent on biobank samples of new heart failure cases at all Stockholm hospitals. SMB enabled this project to start in late autumn 2014, with widespread introduction in 2015. 13
Project status March 2015 Arthritis Earlier and improved diagnostics, treatment and prevention in dialogue with the patient Collaboration with companies specialized in diagnostics and medical informatics and with pharmaceutical companies has been stepped up to hasten the development of improved diagnostics, treatment and prevention. A new online screening service (ontilederna.nu) has been developed and launched. The screening service enables earlier detection and treatment of arthritis diseases. The service was developed in collaboration with patients, general practitioners, nurses, physiotherapists, specialists and software developers. With the improvements made to knowledge support for the Swedish Rheumatology Quality Register (SRQ), patients can report on how they are doing and the healthcare system can follow up. Features have been introduced to remind care providers to ask patients about research studies and biobank sampling. In the area of rheumatology, biobank sampling in routine healthcare has increased within SCC a prerequisite for good clinical research. Using biobank samples, scientists can collaborate with laboratory research to develop new diagnostic methods and more individual-oriented therapy. Ultrasound joint exams are also on the rise. These exams make it possible to visualize the patient s disease development and therapy results and to take tissue samples for research. A project developed by physiotherapists gives patients treated in groups the option of communicating with each other via an app, the tr app. Reporting is standardized and more streamlined and provides specialists with more information on ultrasounds, for example, and shortens patient waiting times to see the specialist. Ultrasound exams are done during the first visit, which improves efficiency and reduces the number of visits overall. A nurse-led clinic has been established and more nurses are being trained in joint status, which provides the basis for a wide-spread introduction of nurse-led clinics with rheumatology expertise. As mentioned above (p. 10), a description system is also being developed in collaboration with patients and the healthcare system. Breast cancer Extended and strengthened patient participation in research A network of clinical researchers has been strengthened and several projects that directly support breast cancer research and development have been started through the connection with 4D. Efforts to start a comprehensive breast cancer biobank have been further strengthened through collaboration with SMB. Breast cancer will serve as a biobanking model and will generate Standard Operating Procedures (SOPs) for the collection of samples and PROMs (Patient Reported Outcome Measures). There are three breast cancer centres in Stockholm: Karolinska University Hospital in Solna, Södersjukhuset (Stockholm South General Hospital) and Capio St. Göran s Hospital. All share collective responsibility for all aspects of healthcare. 4D Breast Cancer is part of SCC s regional cancer plan, which is supported by the Regional Stockholm Gotland Cancer Centre (RCC Stockholm Gotland). Efforts are focused on the construction of these three breast cancer centres that integrate care and research, imposing specific requirements on the hospitals for quality indicators and research. Newly established research coordinators are on-site at each centre. This work also includes the development of new methods to increase patient participation in healthcare and research. The breast cancer project is developing a solution to provide patients with a personalized healthcare plan and give healthcare services an integrated picture of the patient s appointments, healthcare contacts and where the patient is in the breast cancer process. The patient will also have the option of communicating with care providers electronically. Patients consent for research study participation increased from 66 to 97 per cent in a pilot project, thanks to an app accessible via the web. Nurses have taken active part in the development and implementation of 14
the new patient consent app, which was a contributing factor to its success. Patient-related outcome measurements have also been developed, including post-treatment symptom reports and post-surgery satisfaction with cosmetic results. These will be implemented for follow-up in the national breast cancer quality register. In connection with 4D, a risk model is being developed to enable identification of women at high risk of developing breast cancer. A study was launched in 2015 at Södersjukhuset in collaboration with RCC Stockholm Gotland to identify the dose of preventive treatment that is most effective in reducing incidence of breast cancer with the fewest side effects. Diabetes type 2 New forms of screening, early prevention and improved primary care process In a sub-project at health centres aimed at strengthening primary care, several methods were tested for detecting prediabetes and diabetes type 2 in high risk groups. Preliminary findings show high levels of glucose disorder among the patients examined. A model for primary care sample taking for biobanks was tested in parallel with this sub-project. A screening collaboration with units that expect high prevalence rates of diabetes type 2 (eg, maternity and psychiatric care units) is now beginning. Interventions aimed at preventing pre-diabetes from developing into diabetes type 2 are being designed and tested. Another sub-project, aimed at strengthening primary care efforts with diabetes type 2, is defining an optimal healthcare process for diabetes. The process description is based on the National Board of Health and Welfare s national guidelines for diabetes care, and includes success factors for diabetes care specified by the National Programme Board for Diabetes. An extensive research project was conducted based on interviews with patients and healthcare workers and healthcare conditions were mapped. Based on this, the detailed healthcare process for diabetes type 2 has been adjusted, and barriers/success factors and role distribution are now clearly specified. A tool for quality improvement efforts is now being designed and adapted for the internet. Both the process and the tool will be tested and evaluated during the year. In the long term, the process model can be tested with other prevalent diseases. To improve conditions for future research, an evaluation is being conducted of three different methods for screening people for pre-diabetes and diabetes type 2, including the methods apparent effectiveness in screening people from various ethnic backgrounds. This part of the project is focused on working with SMB to create a biobank with serum, plasma and DNA samples from well-characterized individuals with prediabetes, diabetes type 2 and healthy control subjects. These samples can then be used, for example, to identify early biomarkers for diabetes and potentially also biomarkers for other metabolic disorders such as obesity, hypertension and dyslipidaemia. The objective is to be able to provide preventive and health-promoting measures through the early identification of individuals at risk of developing diabetes type 2. Heart failure New standardized procedures in the chain of care The objective of 4D Heart Failure is earlier diagnosis of heart failure and better care, treatment and cooperation between care givers, with cardiac clinics serving as the hub. The project s work is focused on achieving wide-spread acceptance among all cardiac care operators. One important result of this work is that a common basic structure for various testing, analyses and data storage is used by representatives of all cardiac units in the healthcare system (all hospitals, general practitioners interested in heart failure, and private cardiologists) as well as all physiological clinics and their private partners. Through 4D, five Stockholm County hospitals have been able to expand existing cardiac services. Cardiac doctors and nurses, in collaboration with out-patient doctors, will help give patients effective treatment and an individual healthcare plan. 15
By working with cardiac doctors and nurses at these facilities, new standardized procedures have been designed. These will include a common heart failure school and cardiac exercises for many patients. Work with 4D has simplified doctors registration of patient data in the quality register as well as work done with cardiovascular records, which has a new standardized structure. Specialists and key people in heart failure care have been involved in designing models for standardized data collection and reporting on cardiac ultrasound measurements. Working together, they determined the specific variables to be measured by ultrasound and the way these will be reported in analytical findings. This is likely to make widespread introduction significantly easier. With increased participation, more people follow the new procedural guidelines. A solution is also being developed for the shared storage of exam images. This will facilitate secondary review by other units, with no need for repeat examinations. To increase patient participation and improve treatment adaptability and self-care behaviour, an experiment with patient at-home self-registration (via tablet) has been initiated. Using the tablet, the patient can self-monitor disease development and receive short advice on medication and lifestyle, improving general health and reducing the need for doctor visits. There is greater collaboration between research and healthcare in 4D s project groups. Among other things, the work is based on an improved healthcare structure providing a better research structure, and vice versa. The connection to the industry is crucial. A research grant awarded by AstraZeneca in parallel with the 4D project expedited changes to the healthcare structure. Without the changes made within the healthcare system, including structured medical records, this grant would very likely have been more difficult to obtain. Read more about this research project on page 13. Informatics Enables collaboration and dialogue 4D Informatics work is based on the needs of the diagnostic groups, which initially involves patient participation, healthcare decision support, prevention of chronic disease and collaboration with clinical research. With the development of general IT support integrated via the healthcare system s service platform, all or parts of this IT support can be reused. Anything produced for one diagnosis group can be quickly and effectively adapted to another diagnosis. The project develops integrations between resident and patient reporting, medical record systems, decision systems and research databases. The connections that are developed can easily be reused in other areas, meaning that new solutions can be introduced much more quickly. To date, the project has delivered service contract solutions that enable the transmission of decision data to and from medical record systems and transmission of research data for decision support. The project has also enabled the secure transmission of early detection screening results and patient questionnaires (eg, on living habits) from residents to the right primary and/or specialist care provider via the service platform. The general solution for Patient Self-Testing (PST), also developed during the year, will make it possible for patients to initiate and book blood tests themselves and transmit test results to their care provider. With simplified consent management, patients can consent to have their valuable samples saved in a biobank. 16
Data becomes information that enables collaboration and knowledge building The individual Health and medical care Research Online screening service Decision support for care providers in online medical records Self reporting Research portal Information technology tools My Healthcare Contacts Quality register 1177 Healthcare provider guide Data combined in health and medical care IT infrastructure Quality register (patient data) System for medical records Biobank samples/ Laboratory test results Drugs All sources that contain information about the patient (eg, quality registers, medical record systems, test results, medication) are integrated with the knowledge held by research and healthcare. Technological solutions for tablets and mobile phones are produced to take care of the information. This development work is done in collaboration between patients and healthcare professionals. The technological tools can then be used by care providers, researchers and patients, who also have access to the evidence-based knowledge that is integrated with the information. 17
Collaboration with other initiatives International level Much of the research connected to 4D is conducted within the scope of various international collaborations. Horizon 2020 has funded research closely linked to 4D examplified by SMART2D 1, a care-related research project on diabetes type 2. A collaboration with the Copenhagen region and the city of Utrecht has been initiated as preparation for the upcoming Horizon 2020 applications, due in April 2015. Breast cancer and heart failure are the diagnoses that are primarily involved. Programme 4D collaborates with the International Consortium for Health Outcomes Measurement (ICHOM), which works with the standardization and reporting of healthcare outcomes (health outcome measures) for various diagnoses. The ICHOM was founded by Harvard Business School, Boston Consulting Group and Karolinska Institutet to enable the world s different healthcare systems to answer these questions in a comparable way. The ICHOM will sequentially produce standardized health outcome measurements for the four diagnoses. National level reporting cost in relation to value for various healthcare measures. One example is the 4D Breast Cancer project s direct involvement in efforts to produce health outcome measures for patients with this diagnosis. The strategic innovation programme to combat prevalent diseases (SWElife) is a national initiative to coordinate and develop stable research and innovation process es. The 4D projects will apply to the programme during the spring of 2015. Regional level It is crucial to ensure that dialogue takes place with other regional initiatives. Karolinska University Hospital, for instance, is conducting the Value-based Care at Karolinska University Hospital project. The 4D Arthritis, Breast Cancer and Heart Failure projects are among those that have been involved to date. A similar initiative, linked to 4D Breast Cancer, is part of the work being conducted within the framework of SCC s cancer plan at other cancer facilities in the region. Another example is Kroninnovation, which will prepare proposals for a more value-based compensation and follow-up model for general practitioners. The national-level quality register initiative is instrumental in improving the information structure. Development of the Swedish Rheumatology Quality Register (SRQ.se) with special research reminders is one example of 4D co-funding. Another example is the SHD 2 (Structured Healthcare Data project a common cardiac journal created by directly transferring data to various quality registers. Development of a quality register for breast cancer is a collaboration between 4D Breast Cancer and the national cancer registers. Work with breast cancer is also part of the national cancer strategy to create cohesive, patient-focused healthcare processes for all types of cancer. Collaboration between regional cancer centres creates opportunities for healthcare development and research cooperation with other areas of the country. An example of this is the research portal for clinical studies that is currently under construction. SVEUS is the national collaboration for value-based compensation and follow-up in the health and medical care system. SVEUS s objective is to create systems for 1 SMART2D Global Alliance for Chronic Diseases: prevention and treatment of type 2 diabetes, (ki.se/en/phs/smart2d) 2 In Swedish, Strukturerat VårdData (SVD) 18
6. Would you like to learn more about 4D? For additional information about Programme 4D, please contact: Christina Holmström, SCC (christina.holmstrom@sll.se) Ebba Carbonnier, KI (ebba.carbonnier@ki.se) For additional information about the five 4D projects, please contact: 4D Arthritis: Sofia Ernestam (sofia.ernestam@ki.se) and Lars Klareskog (lars.klareskog@ki.se) 4D Breast Cancer: Kjell Bergfeldt (kjell.bergfeldt@sll.se) and Yvonne Wengström (yvonne.wengstrom@ki.se) 4D Diabetes Type 2: Eva Toft (eva.toft@ki.se) and Claes-Göran Östenson (claes-goran.ostenson@ki.se) 4D Heart Failure: Hans Persson (hans.persson@ds.se) and Cecilia Linde (cecilia.linde@ki.se) 4D Informatics: Staffan Lindblad (staffan.lindblad@sll.se) Learn more at ki.se/en/4d (see also Research Appendix) or vardgivarguiden.se/4d (Swedish only) For more information about Stockholm s Medical Biobank, please contact Lena Brynne (lena.brynne@sll.se) 19