Die Integration der Patientenperspektive im Bereich seltener Erkrankungen aus Sicht der Gesundheitsökonomie

Bemühungen zur Integration der Patientenperspektive im Gesundheitswesen haben in Anbetracht des Spannungsfeldes zwischen medizinischer Kompetenzhoheit und der Rolle des Betroffenen als Koproduzent seiner Gesundheit eine Vorgeschichte, die so alt erscheint, wie die Medizin selbst. Jüngst wird die Integration der Patientenperspektive in Deutschland dem Jahr 2003 zugeordnet, in dem zum ersten Mal Informations-, Aufklärungs- und Integrationspflichten gegenüber Patienten gesetzlich vorgegeben wurden. So unterstützt die politische Verankerung der Patientenintegration die Effektivität des Gesundheitssystems im Sinne einer patientenorientierten Versorgung. Der Begriff der seltenen Erkrankungen subsumiert eine Vielzahl an Erkrankungen. Ausschlaggebend ist hier das Kriterium der teils landesspezifisch definierten Prävalenz. In der Europäischen Union spricht man von einer seltenen Erkrankung ab weniger als fünf Betroffenen je 10.000 Einwohner. In Deutschland sind demnach circa vier Millionen Menschen betroffen. Diese leiden meist unter chronischen Leiden mit genetischem Ursprung und schwerwiegendem Verlauf, deren Symptome und alltägliche Herausforderungen je nach Subpopulation variieren. Aus diesen Gründen wurden politische Maßnahmen implementiert, wie beispielsweise der Deutsche Nationale Aktionsplan für Menschen mit Seltenen Erkrankungen oder gesonderte Zulassungsverfahren für medizinische Interventionen, mit dem Ziel, der Unterdeckung wissenschaftlich belegter Versorgungsbedarfe entgegen zu wirken. Neue Versorgungsstrukturen bergen die Chance unter Berücksichtigung knapper Ressourcen eine besonders bedarfsgerechte Versorgung mit Hilfe der Integration der Patientenperspektive zu entwerfen. Gerade hier gilt es die Berücksichtigung der Patientenperspektive sowie die Verwendung angemessener Methoden wissenschaftlich zu begleiten und zu unterstützen. Das Ziel der vorliegenden Arbeit ist daher, aktuelle Entwicklungen zu untersuchen und fundierte, praxisorientierte Methoden der direkten und systematischen Integration von Patientenperspektiven aus Sicht der Gesundheitsökonomie exemplarisch für den Bereich der seltenen Erkrankungen aufzuzeigen. Diese kumulative Doktorarbeit umfasst neun Module. Modul 1 zeigt zunächst aktuelle Entwicklungen und methodische Alternativen der Integration der Patientenperspektive anhand des frühen Nutzenbewertungsverfahrens bei Arzneimitteln für seltene Erkrankungen. Im Anschluss werden Potentiale der Anwendung verschiedener Methoden der direkten und systematischen Integration der Patientenperspektive aus Sicht der drei gesundheitsökonomischen Ebenen, Mikro-, Meso- und Makroebene, vertiefend dargestellt. So zeigt Modul 2 zunächst auf Mikroebene die Bedeutung verschiedener Informationszugangswege für Betroffene seltener Erkrankungen und dass als erste Anlaufstelle die Internetinformation genutzt wird. Hier wird deutlich, dass die Berücksichtigung des in Modul 3 aufgezeigten Qualitätskriterienkataloges zur Einschätzung der Informationsqualität bei dürftiger Informationsbasis im Kontext seltener Erkrankungen als besonders relevant einzustufen ist. Im folgenden Schritt tritt die Interaktion mit dem Arzt in den Vordergrund. Mit Hilfe des Konzeptes der partizipativen Entscheidungsfindung können die durch Betroffene gesammelten Informationen im Versorgungskontext miteinfließen (Modul 4). Auf Mesoebene erweist sich das Analytic Hierarchy Process Konzept als besonders geeignet, um patientengetragene, transparente Entscheidungen im Versorgungskontext zu integrieren (Modul 5, 7). Bei der Wahl des Verfahrens ist insbesondere die Schwere der Krankheitslast zu berücksichtigen, da bei einem chronischen und schwerwiegenden Verlauf der seltenen Erkrankung die Zumutbarkeit des Verfahrens relevant ist (Modul 6). Auf Makroebene bestätigt sich am Beispiel eines Informationstelefons zu seltenen Erkrankungen der Nutzen qualitativer Verfahren zur Integration der Patientenperspektive bei der Konzeptionierung neuer Versorgungsstrukturen (Modul 8). Modul 9 zeigt wie quantitative Präferenzmessmethoden und qualitative Methoden ineinandergreifen können, um innovative Versorgungsstrukturen nahe am Bedarf der Betroffenen zu etablieren. Zusammenfassend lässt sich somit feststellen, dass bei der Integration der Patientenperspektive im Bereich der seltenen Erkrankungen gerade Patientenpräferenzen sowie die Patientenzufriedenheit bereits jetzt deutlicher Berücksichtigung finden könnten. Forschungsbemühungen können den politischen Verankerungsprozess weiter unterstützen. Bei der Zusammenfassung aufgezeigter Methoden als Teil von Methodenkatalogen gilt es, auch auf weitere Erhebungsmöglichkeiten und deren Vor- und Nachteile zu achten sowie prävalenzabhängiger Empfehlungen für den sinnvollen und zielorientierten Einsatz im Bereich seltener Erkrankungen zu etablieren. Die indikationsübergreifende Aktualität der Thematik der Integration der Patientenperspektive zeigt sich bei der Entwicklung und Implementierung neuer Versorgungsstrukturen unter Berücksichtigung steigender Finanzierungsbedarfe unter der Prämisse konstanter Beitragssätze. Im Rahmen einer wissenschaftlichen Begleitung und gesundheitsökonomischen Evaluation scheint es demnach von höchster Relevanz stets zu hinterfragen, ob die zielgerichtete Versorgungsstrukturausrichtung am Bedarf, der direkt am Patienten erhobenen wird, die Chance birgt, das Gesundheitssystem noch effizienter zu gestalten.Efforts to integrate patient perspectives into health care have a long history, seemingly as old as medicine itself, and include striking a balance between medical sovereignty and patients as co-producers of their own health. In Germany, a law was passed in 2003, requiring for the first time the integration of patient perspectives, including patient information, medical enlightenment and integration requirements. In this regard, the political anchorage of integrating the patient’s perspective seeks to endorse the affectivity of health care systems in the sense of patient-centred care. The terminology of rare diseases summarizes a variety of diseases. The decisive criterion is the prevalence rate, partly defined at a country level according to a set prevalence standard. In the European Union, a disease is defined as rare when it affects less than five in 10,000 people. Therefore, in Germany, approximately four million people are affected by a rare disease. Those affected predominately suffer from chronic and severe diseases with a genetic origin, whose symptoms and daily challenges vary depending on the subpopulation. Thus, policy measures have been implemented; for example, the German National Action Plan for Rare Diseases, or specific approval procedures for medical interventions, which aim to counteract the deficit in scientifically revealed health care service needs. For this very reason, new health care structures provide the opportunity to conceptualize a particularly needs-oriented health care system with the help of patient integration. As such, the integration of patient perspectives and the utilization of appropriate methods need to be scientifically monitored and endorsed. Therefore, the aim of the underlying thesis is to examine recent developments and to point out profound, practice-oriented methods for the direct and systematic integration of patient perspectives from the perspective of health economics exemplary in the field of rare diseases. This cumulative doctoral thesis comprises nine modules. Module 1 highlights the recent developments and methodological alternatives regarding the integration of patient perspectives based on the example of the early benefit assessment process for pharmaceuticals used in the treatment of rare diseases. Further, the potential of different methodologies for the direct and systematic integration of patient perspectives are outlined in-depth from the standpoint of the three health economic levels, micro, meso, and macro level. In this regard, Module 2 presents the different information-access points for people affected by rare diseases, with information from the Internet as the first point of contact. It is at this point that the rendered quality criteria catalogue for the assessment of information quality, presented in Module 3, proves to be of particular relevance in the context of rare diseases. In the next step interactions with physicians come to the fore. With the help of the shared decision-making concept, the information collected from patients can be fed into the context of health care services (Module 4). At a meso level, the concept of the analytic hierarchy process shows to be particularly suitable for the direct integration of patient-supported transparent decisions (Modules 5, 7). When choosing a methodology, it is of particular importance to consider the severity of the disease, as in the case of a chronic and severe course of the rare disease the reasonableness of the approach is of relevance (Module 6). At a macro level, the example of a helpline for rare diseases validates the benefits of qualitative methods for the integration of patient perspectives into the development of innovative health care concepts (Module 8). Module 9 demonstrates how quantitative preference measurement methods and qualitative methodologies can engage with each other to establish innovative health care structures that are close to the needs of patients. In conclusion, it can be determined, that patient preferences and patient satisfaction as part of the integration of patient perspectives within the field of rare diseases could be integrated already clearer. Comprising the shown methods during the development of best practice handbooks, further survey methods and their pros and cons shall be examined, as well as prevalence-related recommendations for reasonable and targeted application in the field of rare diseases. The actuality of the topic indications of patient perspectives integration across various indications can be observed in the development of innovative health care structures, such as for example the latest online health coaches or health apps, while also considering the increasing financial requirements under the premise of retaining constant health insurance contribution rates. Within the scope of scientific monitoring and health economic evaluation, it therefore seems to be of highest relevance to always challenge whether the targeted health care structure alignment with the needs directly expressed by patients bears the chance to organize the health care system even more efficiently

Development of a cancer decision tool

The Affordable Care Act and Medicare identify the need of a shared-decision model in health care. This model would improve patients’ quality of life by removing the information barrier that currently exists between patient and physician. Using the shared-decision model and current technology, I developed a decision tool that facilitates the ability to make a timely shared decision. This tool has significant public health importance, in that improved decision making can add to the individual’s quality of life. The developed decision tool receives decisions from patients in regards to 28 questions over 8 specifically chosen criteria that have significant importance to patients with brain metastases, while the physician criteria has 5 patient specific factors that have significant importance in treatment options. All 8 patient criteria and 5 physician adjustment factors are reviewed in the literature to support the weighted impact on the treatment options: best supportive care, stereotactic radiosurgery, and whole brain radiotherapy. Both patient and physician criteria are next analyzed within a custom developed matrix across the treatment options. The matrix design is based on a fuzzy analytic hierarchy process to calculate, rank, and show to a degree the best option in form of percentage fit for each treatment option. The final result can then be used in the discussion between patient and physician for developing a treatment pathway

Screening and Sufficiency in Multiobjective Decision Problems with Large Alternative Sets

Portfolio selection problems with combinatorially-large alternative sets can be impossible to evaluate precisely on a reasonable timescale. When portfolios require complex modeling for performance assessment, prohibitive computational processing times can result. Eliminating a small number of alternatives through an intelligent screening process can greatly reduce the number of alternative combinations, thereby decreasing a problem\u27s evaluation time and cost. A methodology was developed for the class of hierarchical portfolio selection problems in which multiple objectives are all judged on the same sub-objectives. First, a novel capability-based alternative screening process was devised to identify and remove poor alternatives, thereby reducing the number of portfolios. Then, a performance-based portfolio screening process was explored to estimate portfolio sufficiency according to the performance requirements of the decision maker. Following the establishment of a set of sufficient portfolios, the analyst can employ higher resolution post-analysis methods to choose a final solution. Finally, the methodology was applied to a portfolio selection problem in which the United States Strategic Command attempts to select an ideal mix of intelligence, surveillance, and reconnaissance assets. After deconstructing the actual objective hierarchy, a set of representative alternatives were evaluated and a variety of screening procedures were applied to demonstrate significant reduction in the number of possible portfolios

Customer Needs Report

Customer Needs Report

Evidence Based Medicine

Evidence-based medicine (EBM) was introduced to the best benefit of the patient. It has transformed the pathophysiological approach to the outcome approach of today's treatments. Disease-oriented to patient-oriented medicine. And, for some, daily medical practice from patient oriented to case oriented medicine. Evidence has changed the paternalistic way of medical practice. And gave room to patients, who show a tendency towards partnership. Although EBM has introduced a different way of thinking in the day to day medical practice, there is plenty of space for implementation and improvement. This book is meant to provoke the thinker towards the unlimited borders of caring for the patient

Entrance to and advancement within the Swedish medical labour market for physicians with a medical degree from outside the European Union

Background Many physicians who migrate wish to continue practicing medicine in their destination country. However, they may meet barriers and obstacles that prolong the process of entering and advancing within the destination country’s medical labour market. Migrant physicians’ competences are needed, and if fully utilised, it will be beneficial for them, the patients, the medical workforce, and for society. Aim The aim was to explore the entrance to and the advancement within the Swedish medical labour market for physicians with a medical degree from outside of the EU/EEA. Method The study participants were mainly physicians who had enrolled in a complementary programme for physicians with a medical degree from outside the EU/EEA and Switzerland. Both qualitative and quantitative methods were used. Study I included semi-structured interviews with 24 physicians. Study II was a cross-sectional study that included questionnaire data from 283 respondents. Study III included test data from physicians with a medical degree from outside the EU/EEA who had taken a licensing exam 2013–2019 (n = 564), and 14 semi-structured interviews. Study IV included questionnaire data from 101 respondents, and four semi-structured interviews. Interview transcripts and questionnaire free-text answers were thematically analysed. For Study II, the statistical data were descriptively analysed. For Study III, linear and logistic regression analysis were used. In Study IV, descriptive and inferential statistical analyses were performed on the data. To understand and discuss how MPs enter and advance within the medical labour market in Sweden, Bourdieu’s concepts of the social field, symbolic capital and doxa were used as a lens. As a complement to Bourdieu’s theory, self-determination theory (SDT) was used. Results In Study I, several conceptions about working in rural and remote areas in Sweden were identified. These regarded the themes finding work, work content and tasks, and living. Conceptions about working in a certain type of area gave rise to conceptions about what it would be like to live in the same area. The participants’ conceptions derived from their own and from others’ experiences; and conceptions influenced study participants’ motivation of where to work, negatively or positively. In Study II, 88% of the respondents held a position as a physician when answering the questionnaire, but they were in varying stages of their careers from one another; as they also had begun the complementary programme at different times. The respondents had mainly found their first job after the programme via spontaneous job applications, during internships or via friends or other programme participants. Barriers and facilitating aspects as well as the different strategies they used were explored. During their job-seeking process, the respondents reported experiencing discrimination or having their competences undervalued. To increase job prospects, the respondents had, for example, worked as assistant nurses or medical assistants before beginning the complementary programme. Respondents had developed their language by using different resources. Due to high labour market conditions, respondents had moved or changed specialty to increase job prospects. Study III revealed that age was a predictor for succeeding on the licensing exam, and that the complementary programme seemed to reduce the negative age effect for participants aged 45 years or older. In the qualitative material, perceived influential aspects for succeeding or failing on the exam related to the two themes preparations and biographical aspects, and to the exam and exam situation. Study IV explored aspects that influenced choices of employment and specialty, and found that the most important aspects related to choosing employment were the ability to combine work with family, and possibilities for developing competences. The majority of the respondents had specialised in general medicine, and women were more likely to specialise in general medicine than men. Influencers on the interviewees’ motivation and choice to specialise in general medicine related to the themes of job opportunities, positive experiences from PHC, working conditions and family conditions. Conclusions Barriers and limiting circumstances may derive from the micro and meso levels, and influence on a micro level; however, individuals still have agency. They can influence their paths to the labour market and advance within it through certain strategies and/or facilitating aspects. Many barriers and facilitating aspects corresponded to one another and were two sides of the same proverbial coin. The social context and environment influenced the study participants’ choices regarding where to work and in which specialty. Aspects relating to work life and private life collaborated to influence motivation and choices. As a group, these MPs could be interpreted as being hierarchically positioned lower in the Swedish medical field than physicians who trained in the country. However, on an individual level, this may not hold true, as the group is heterogeneous in terms of gender, ethnicity, country of origin, country for medical education, and age. Influential aspects on the macro, meso and micro levels may change over time

Lesbian Patients Using Online Video Profiles to Find Doctors: How Cues Inform the Decision-making Process

Today, the growth of the use of web-based communication technologies and online health information creates an environment where people can find vast amounts of information about physicians from several sources. Some health care organizations offer physician profile videos that feature individual physicians providing professional and personal background. Videos provide a rich channel for patients to find physicians who best meet patient needs and expectations. Physician videos provide an introductory view into the communication style and demeanor of the physician, both of which contributes to the health outcomes of the patient. Because of previous negative health care experiences or the fear of having a negative experience, many LGBTQ people delay seeking care health care or refuse seeking care altogether. The delay in care and refusal of care contributes to significant LGBTQ health disparities. One effective way to help overcome this barrier to effective health care is to help patients find LGBTQ-accepting health care providers, where fear of stigma will not be a factor. Using uncertainty reduction theory and media richness theory as foundations, this study examines how lesbians could use physician videos to identify LGBTQ-friendly physicians. Using actual video profiles to prompt discussion, two focus groups of eight lesbians each discussed the importance of a physician being LGBTQ-friendly, the characteristics lesbian patients look for or like in physicians, and what verbal and nonverbal cues lesbians look for to form judgments about physicians’ acceptance levels. The findings indicate the participants agreed that physician LGBTQ-friendliness is important in helping reduce irrelevant medical questions, include loved ones in health care experiences, and improve the quality of care. The participants discussed the physician qualities most appreciated in physicians including being authentic, creating a balance of being down-to-earth while professionally confident, and being female. The cues the participants would consider distinguishing LGBTQ-friendly physicians include the use of keywords and inclusive language. But, most importantly the participants indicated the desire to see physicians be explicit and direct about welcoming LGBTQ patients. The directness would provide visibility to the LGBTQ community which seems to be mostly absent in representation in physician videos today. The theoretical and practical implications are discussed. Tips are shared for physicians who desire to have better reach to LGBTQ patients

The Disadvantaged Status in the American Medical College Application Service: Medical Students Reflect on Their Experiences

The option to identify as disadvantaged in the American Medical College Application Service (AMCAS) primary application may lead to unclear expectations for applicants. Despite its inception more than a decade ago, there are no published materials containing either a comprehensive definition, or explanation of the role of the Disadvantaged Status in student selection. Research on the Disadvantaged Status is similarly lacking. The purpose of this interpretivist case study was to explore how current students made meaning of the option to identify as disadvantaged when they were applying to medical schools. Through this research I uncovered meanings applicants ascribed to the disadvantaged term, how they determined whether they were disadvantaged, and how they decided whether or not to apply as such. Through open-ended interviews with 15 students at a medical school in the Northeast, document analysis of their AMCAS files, and with a theoretical framework that included symbolic interactionism, social comparison theory, stigma, and impression management, it became clear that deciding whether or not to apply as a disadvantaged applicant in the AMCAS primary application is both complex and fragile. Simply having experienced hardships during childhood was insufficient for many participants in this study to determine whether or not they were disadvantaged or should apply as such. The process of determining whether or not to apply as a disadvantaged applicant was confounded by a myriad of factors represented by the following nine themes: experience with disadvantage, resources, ambiguity, audience, pride, stigma, ethics, right to identify, and impression management. I concluded this dissertation with what I considered to be the most significant implications, in particular, that not all applicants are using the Disadvantaged Status consistently. I made recommendations for staff at the Association of American Medical Colleges, faculty and staff at medical schools and undergraduate institutions, and future applicants. I closed this dissertation with my final thoughts on this research experience