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Dans le but d’améliorer l’accès au traitement pour les patients souffrant des maladies rares, les gouvernements de certains pays ont mis en place une législation ‘orpheline’ dont le but est d’aider à promouvoir la recherche dans ce secteur. En conséquence, le nombre de médicaments orphelins approuvés a significativement augmenté et continue de croître. Cependant, beaucoup de questions restent encore sans réponses. Les coûts par patients élevés, le manque de connaissance sur les maladies, et d’autres spécificités des médicaments orphelins font obstacle à l’utilisation de méthodes d’évaluations standards. L’objectif de cette étude est d’identifier les critères qui permettraient de déterminer la valeur des médicaments orphelins et les préférences de la société vis-à-vis de ces critères.Dans la première phase de l’étude, un état de l’art du marché des médicaments orphelins a été mené. Les défis associés tant à la recherche & développement qu’à l’évaluation des médicaments pour les maladies rares ont été décrits et classifiés. Une revue de toutes les autorisations de mise sur le marché pour les médicaments orphelins en Europe, ainsi que du marché des médicaments orphelins en France, en Italie, en Angleterre et au Pays de Galles a été réalisée. La disponibilité des médicaments orphelins, leur prix et leur remboursement, ainsi que les détails de l’évaluation par les autorités de santé ont été analysés.Dans la seconde phase de l’étude, une revue de littérature a été effectuée afin d’identifier les déterminants potentiels de la valeur des médicaments orphelins. L’impact de certains de ces attributs - dont le choix a été fait en fonction de la disponibilité des données - sur les prix des médicaments orphelins en France, en Italie, en Angleterre et au Pays de Galles a été exploré à l’aide d’une analyse de régression.Enfin, une enquête en ligne a été menée auprès d’un échantillon représentatif de la population française, afin d’étudier ses préférences relatives à certains attributs, sélectionnés au préalable. La liste de déterminants a été développée en se fondant sur un groupe de discussion et des interviews avec des experts. La méthode de l’enquête a suivi la structure d’un questionnaire à choix discrets et a permis d’estimer les poids relatifs des déterminants étudiés.L’étude a permis d’identifier les caractéristiques des médicaments orphelins qui sont le plus appréciées par la société. Ces résultats pourraient être pris en considération dans la méthode d’évaluation des médicaments orphelins, afin de la rendre plus transparente et robuste. / In order to improve the access to treatment for patients suffering from rare diseases, the governments of several countries put in place specific ‘orphan’ legislation aiming at promoting research in the field. In response to these measures, the number of approved orphan drugs has dramatically increased and continues to grow. Nevertheless, a number of issues remain unresolved. Thus, high per-patient costs, poor knowledge of the diseases and other specificities of medicines for rare diseases make it impossible to apply standard methods of health technology assessment to orphan drugs. The objective of the present research was to identify the criteria that determine the value of orphan drugs and study public preferences regarding these criteria.In the first phase of the research, a detailed review was conducted of the current situation on orphan drug market. Challenges related to the development and appraisal of orphan drugs were described and catalogued. A review was carried out of all approvals of orphan drugs in Europe, as well as of orphan drug markets in France, Italy and England and Wales. Orphan drug availability, price and reimbursement status, as well as the details of assessment were analysed.In the second phase, a literature review was conducted to identify potential determinants of orphan drug value. The impact of some of these determinants (choice was based on the availability of data) on orphan drug prices in France, Italy and England and Wales was then explored in a regression analysis.Finally, preferences of French general population in relation to the most relevant determinants of orphan drug value were analysed using an online survey. The list of determinants was developed based on a focus group and expert interviews. The survey was designed as a discrete choice experiment and allowed estimating relative weights of the included determinants.The study allowed identification of orphan drug characteristics that are most valued by the society. Its results may be taken into consideration in drug appraisal process in order to enable a fair assessment and pricing of orphan drugs.

abstract: Energy projects have the potential to provide critical services for human well-being and help eradicate poverty. However, too many projects fail because their approach oversimplifies the problem to energy poverty: viewing it as a narrow problem of access to energy services and technologies. This thesis presents an alternative paradigm for energy project development, grounded in theories of socio-energy systems, recognizing that energy and poverty coexist as a social, economic, and technological problem. First, it shows that social, economic, and energy insecurity creates a complex energy-poverty nexus, undermining equitable, fair, and sustainable energy futures in marginalized communities. Indirect and access-based measures of energy poverty are a mismatch for the complexity of the energy-poverty nexus. The thesis, using the concept of social value of energy, develops a methodology for systematically mapping benefits, burdens and externalities of the energy system, illustrated using empirical investigations in communities in Nepal, India, Brazil, and Philippines. The thesis argues that key determinants of the energy-poverty nexus are the functional and economic capabilities of users, stressors and resulting thresholds of capabilities characterizing the energy and poverty relationship. It proposes ‘energy thriving’ as an alternative standard for evaluating project outcomes, requiring energy systems to not only remedy human well-being deficits but create enabling conditions for discovering higher forms of well-being. Second, a novel, experimental approach to sustainability interventions is developed, to improve the outcomes of energy projects. The thesis presents results from a test bed for community sustainability interventions established in the village of Rio Claro in Brazil, to test innovative project design strategies and develop a primer for co-producing sustainable solutions. The Sustainable Rio Claro 2020 initiative served as a longitudinal experiment in participatory collective action for sustainable futures. Finally, results are discussed from a collaborative project with grassroots practitioners to understand the energy-poverty nexus, map the social value of energy and develop energy thriving solutions. Partnering with local private and non-profit organizations in Uganda, Bolivia, Nepal and Philippines, the project evaluated and refined methods for designing and implementing innovative energy projects using the theoretical ideas developed in the thesis, subsequently developing a practitioner toolkit for the purpose. / Dissertation/Thesis / Doctoral Dissertation Sustainability 2020

The importance that governments put into open government data policies has increased over the last decade. However, a decreasing speed in this trend is potentially ongoing due to the objectives of these policies not being perceived as completed. Therefore, locating the impacts and measuring their relative value generation aids the understanding of how these objectives can succeed. This study examines the impacts of open government data in Sweden and their potential value generation, focusing on the financial ones. In this study, we developed a measurement model that comprehends six different impacts that generate a value. These impacts are innovation for established firms, innovative start-ups, innovation for public institutions, anti-corruption, and democracy/civil participation. The study has used 24 semi-structured interview findings to develop the model using the grounded theory method. The model was then subsequentially tested and validated by conducting a survey.  We used PLS-SEM as a method of analysis of the 69 responses on the survey from Swedish experts in the field. The results show a positive influence on the open government data financial value generation in the Swedish context, originating from data-driven innovation in established firms. Adding to this, positive impacts on the social value generated from open government data originate from innovative start-ups and product innovation in public institutions. The social value generated was also found to influence the financial value generation. Overall, the results also confirmed that the measurement model assessed is suited for evaluating the value generation of open government data. Thus, the study contributes to policies by visualizing the potential impacts and values that specific policy decisions may yield. Besides, the study contributes to theory thanks to developing a measurement model that could be applied to different contexts. Finally, a unique method that combines model development, context understanding, and model testing is used in the research. This method is considered a contribution due to its potential to be applied to future case study research.

Value is fundamental in business-to-business marketing, where marketing revolves around the term value. Understanding the value of offering through customers' eyes is important for business success. Due to the subjective nature of value, it's imperative to understand the value based on the customer's individual interpretation. In this context, perceived value plays a central theme for this study, and analyzed in the terms of benefits and sacrifices. But to capture the broader picture of customers' value functional, social, and emotional perceived values were considered. The research questions were formed to investigate the kind of values that customers perceive, and another question was framed to investigate the multidimensionality of values. In order to answer the research questions, a qualitative descriptive approach was applied and through judgmental sampling, respondents were chosen. The five potential customers were interviewed through semi-structured technique. The authors applied the model “value hierarchy” to investigate the customer's perceived value which consists of three layers: attributes, consequences and objects; it shows correlation among the three layers. The laddering technique was used in connection with hierarchy, through this technique authors understood how consumers were able to perceive value in each layer. The tangibilization strategy was used to provide cues that helped build mental construct of services in customer’s minds. Customers assess the services by evaluating its value. The value from the consequences were perceived multidimensionally by customers depending on the attributes. Customers perceived functional value in aspects of saving time and ease of workload. They were able to perceive value socially, when some features helped manage stress among the employees and through provision of these services to end customers saw an increase in firm awareness in the market. Customers also felt a feeling of happiness when using certain attributes especially among the end customers thereby bringing emotional value into the picture. All the different values perceived helped reach their respective end-goals.  The model found useful to investigate the customer value sequentially, also evaluating current customer’s needs. The study revealed that the attributes aren't chosen without a purpose. Customers perceive some benefits from the attributes that help achieve their specific needs. The study was confirmation about integrating the model with different value dimensions helped determine the connection of these dimensions with customer value. The study ends with presenting managerial, theoretical and practical implications and provides ground for future research in exploring other framework of values, followed by limitations of the study.

After the Republic of Kosovo's declaration of independence in 2008, new municipal structures were created with the charge of monitoring the delivery of health care services; yet, no mechanism for monitoring performance was ever implemented. With the public value theory as the foundation, the purpose of this multiple case study of 3 Kosovo municipalities was to understand issues surrounding the capacity of local government health department to monitor their performance related to the delivery of services. Relevant data were collected through focus-group discussions with 10 nurses, 9 directors of family medicine centers, and 12 municipal program managers. Purposeful semistructured interviews were conducted with 3 elected officials, 3 leaders of health care services, 3 policy leaders of relevant central-level ministries, and 9 participants from the national coalition of civil society organizations. All data were transcribed and coded per thematic analysis procedures. Results indicated that integrating the threefold value system of business value, social value, and governance value into municipal work plans and policy considerations will likely create a more solution-oriented service delivery at the municipal level. Furthermore, service delivery in the 3 municipalities appears to have improved over the past 5 years because of the pressure from active citizens, increased community engagement, and the institutionalization of home visits. Positive social change implications stemming from this study include the recommendation to central and local policy makers to fully integrate performance-based reporting systems into local legislation and policies. Such efforts can result in sustainable, equitable, and inclusive development, leading to stability and prosperity in Kosovo.

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[pt] Esta pesquisa avalia se existem diferenças significativas nos modelos de negócio e no acesso a recursos no ecossistema, que permitam distinguir e classificar as Iniciativas de Empreendedorismo Social (IES). Também busca compreender como essas diferenças influenciam a criação de valor social. Na ausência de definições teóricas capazes de representar esses aspectos, partiu-se em busca dos critérios de seleção de investimentos sociais e de premiações, considerando inicialmente as quatro maiores organizações globais de apoio ao empreendedorismo social e depois os investidores sociais portugueses. Dados online e entrevistas passaram por análise de conteúdo e de padrões para formar modelos de ressonância e mobilização participante. Esses modelos destacam objetivos, motivações e a forma como as soluções são propostas. A pesquisa exploratória ajudou a superar as limitações teóricas e a incorporar a diversidade de pontos de vista necessária à compreensão do empreendedorismo social. Também permitiu propor uma nova forma de abordar valor social. O enfoque no valor social é uma estratégia de consolidação para o campo de pesquisa, devido a esse construto ser comum à maioria das definições de empreendedorismo social. Esta tese propõe que a multidimensionalidade da criação de valor assuma uma perspectiva de avaliação objetiva e outra subjetiva, considerando-as complementares A perspectiva objetiva reflete quantificação de resultados, comum em pesquisas que buscam identificar o valor social ou as IES. A perspectiva subjetiva relaciona-se com a complexidade de um conceito essencialmente contestado, incorpora o ponto de vista do beneficiário e a relação com o contexto, buscando isolar os efeitos da IES de outros atuantes sobre o problema social. Foi adotada uma estratégia multimétodos para identificação de arquétipos e classificação das IES, propondo uma taxonomia. A metodologia baseia-se na identificação de padrões através de análise qualitativa e quantitativa. As IES estudadas representam 43,63 por cento da população e um investimento público estimado de 29.348.180,00 euros. Atendem juntas 268.533 beneficiários, criam 1078 postos de trabalho remunerados e contam com 5227 voluntários. A partir dos fatores proposta de valor inovadora, capacidade de inovação, disponibilidade de recursos e acesso a investimento, foram identificados os arquétipos Persistente, Ousado e Inovador. A taxonomia é compatível com a literatura e coerente com relatórios oficiais portugueses. As IES inovadoras criam mais valor social de maneira mais eficiente. As IES persistentes são a maioria das novas IES e têm grande potencial de criar valor subjetivo. Porém, são limitadas por sua estrutura organizacional. As IES ousadas criam maior valor objetivo, com menor eficiência na utilização de recursos. A taxonomia permitiu compreender dinâmicas do ecossistema português, esclareceu questões relativas à estrutura das IES e sobre sua influência na criação de valor social. Os resultados contestam a divisão binária onde IES tradicionais têm maior dificuldade de combinar objetivos sociais e econômicos do que as novas. Porém, corrobora e destaca o papel da inovação na combinação complementar desses objetivos. O ecossistema português favorece IES inovadoras e tende a produzir inovações incrementais. Os resultados apontam progresso em relação a fragilidades sinalizadas em estudos anteriores e sugerem a dinamização do ecossistema com um aumento de 31,3 por cento no surgimento de IES. / [en] This research evaluates if there are significant differences in the business models and in the access to resources in the ecosystem, which allow to distinguish and classify the Social Entrepreneurship Initiatives (SEI). It also seeks to understand how these differences influence the social value creation. In the absence of theoretical definitions capable of representing these aspects, the social investment and awards criteria were researched, initially considering the four largest global social entrepreneurship support organizations and then Portuguese social investors. Online data and interviews went through content and patterm-macthing analysis to form models of resonance and participatory mobilization. These models highlight goals, motivations and the way solutions are proposed. Exploratory research helped to overcome theoretical limitations and to incorporate the diversity of points of view needed to understand social entrepreneurship. It also made it possible to propose a new way to address social value. The focus on social value is a consolidation strategy for the research field, due to the fact that this construct is common to most social entrepreneurship definitions. This thesis proposes that the value creation multi-dimensionality assumes an objective and subjective evaluation perspective, considering them as complementary. The objective perspective reflects results quantification, common in research that seeks to identify social value or SEI. The subjective perspective is related to the complexity of an essentially contested concept, it incorporates the beneficiary s point of view and the relationship with the context, seeking to isolate the SEI’s effects from others that strikes the social problem. A multi-method strategy was adopted to identify archetypes and classify SEI, proposing a taxonomy. The methodology is based on patterns identification through qualitative and quantitative analysis. The SEI studied represent 43.63 per cent of the population and an estimated public investment of 29,348,180.00 euros. Together they serve 268,533 beneficiaries, create 1078 paid jobs and have 5227 volunteers. Based on the factors such as innovative value proposal, capacity for innovation, availability of resources and access to investment, the archetypes Persistent, Bold and Innovative were identified. Taxonomy is supported by the literature and consistent with official Portuguese reports. Innovative SEI create more social value more efficiently. Persistent SEI are the majority of new SEI and have great potential to create subjective value. However, they are limited by their organizational structure. Bold SEI create greater objective value, with less efficiency in the resources use. Taxonomy made it possible to understand the dynamics of the Portuguese ecosystem, clarified issues related to the SEI’s structure and their influence on the social value creation. The results contest the binary division where traditional SEI have greater difficulty in combining social and economic goals than new SEI. However, it corroborates and highlights the innovation role in the complementary combination of these goals. The Portuguese ecosystem favors innovative SEI and tends to produce incremental innovations. The results point to progress in relation to weaknesses signaled in previous studies and suggest the dynamization of the ecosystem with an increase of 31.3 per cent in the emergence of new SEI.

Background: The world’s population is confronting challenges related to sustainability. Businesses can and should contribute to solving these challenges, through their activities. Social entrepreneurs are the driving force of scaling social enterprises, through which economic and social value can be maximized. Hence, it is important to understand the leadership factors that shape a social entrepreneur’s capability to lead scaling processes. Purpose: To explore the role leadership factors play in social entrepreneurs’ capability to scale social enterprises Method: Ontology- Relativism; Epistemology- Social constructionism; Strategy- Qualitative, Exploratory; Design- Inductive, Grounded theory; Data collection- 11 Semi-structured interviews; Sampling- Purposive, Snowball; Data analysis- Grounded analysis. Conclusion: Several leadership factors, including background, personality characteristics and skills, motivation, team, work environment, networks and partnerships, environmental forces, and underlying factors, are identified as shaping social entrepreneurs’ capability to scale. By acknowledging not only multiple leadership factors but also on what level they exist and how they are connected, novel insights about social entrepreneurs’ capability to scale are offered.

Titel: Gemensamt värdeskapande i praktiken Författare: Lydia Frykman och Johanna Wennerström Handledare: Rasmus Nyqvist Bakgrund: I dagens samhälle är utmaningarna inom hållbarhet högst väsentliga, till följd av att företag inte tar sitt fulla ekonomiska, ekologiska och sociala samhällsansvar. CSV har som ett resultat av detta blivit alltmer uppmärksammat då konceptet belyser företagens roll i att driva hållbarhetsutvecklingen framåt. Det saknas däremot empiriskt underlag som visar hur företag kan arbeta för att uppnå gemensamt värdeskapande i praktiken, samt hur den komplexa avvägningen mellan företagsnytta och samhällsnytta ska gå till. Därför undersöker denna kvalitativa studie värdeskapande aktiviteter samt avvägningen mellan företagsnytta och samhällsnytta. Syfte: Syftet är att bidra med en ökad förståelse för de aktiviteter som skapar gemensamt värde, vad som krävs för att företagen ska motiveras till dessa aktiviteter samt för hur företag hanterar den komplexa avvägningen mellan företagsnytta och samhällsnytta. Metod: Denna kvalitativa studie utgår från ett hermeneutiskt perspektiv, har en tvärsnittsdesign och en abduktiv forskningsansats. Det empiriska underlaget samlades in genom två studier, som bestod av semistrukturerade intervjuer med företagsrespondenter och experter inom ämnet. Slutsats: Resultaten från studien tyder på att företagen utövar CSV-aktiviteter i olika utsträckning, men att en stor utmaning är att identifiera när det är ekonomiskt rationellt att uppnå ett gemensamt värde. Vidare har studien klargjort att det finns flera drivkrafter till att uppnå gemensamt värdeskapande. Däremot behöver dagens lagkrav ytterligare förtydligande och förbättring, för att företagen ska agera mer osjälviskt. Studien lyfter avvägningen mellan företagsnytta och samhällsnytta och det framgår att det är denna del som är mest väsentlig i diskussionen om hur företag kan uppnå gemensamt värdeskapande. Slutligen har företagens utvecklingsriktning visat att det har adderats en intention om att göra gott för samhället, men faktumet att den ekonomiska faktorn väger tyngst kvarstår. / Title: Creating Shared Value In PracticeAuthors: Lydia Frykman and Johanna Wennerström Supervisor: Rasmus Nyqvist Background: In today's society, the challenges connected to sustainability are highly significant, as a result of companies not fully taking their economic, environmental and social responsibility. As a result, CSV has received increased attention as the concept highlights companies’ role in driving sustainability forward. However, there is a lack of empirical evidence showing how companies can work to achieve shared value in practice, as well as displaying how the complex trade-off between economic and social value creation should be handled. Therefore, this qualitative study examines value- creating activities and the trade-off between economic and social value creation. Purpose: The aim of the study is to contribute to an increased understanding of the activities that create shared value, what it is that motivates the companies to these activities and for how companies manage the complex trade-off between economic and social value creation. Methodology: This qualitative study is from a hermeneutic perspective, has a cross- sectional study design and an abductive research approach. The empirical evidence was collected through two studies, which consisted of semi-structured interviews with respondents from practice and experts within the field. Conclusion: The results of the study displays that companies practice CSV activities, however it ́s explained that it's hard to determine when it's economically rational to achieve shared value and not. Additionally, the study has clarified several driving forces to achieve shared value. Although, it ́s declared that today's legal regulations need further clarification, in order for companies to act more selflessly. Furthermore, the study highlights the trade-off between economic and social value creation and it appears from the results that this ́s the most essential part in the discussion of how companies can achieve shared value. Finally, the companies’ development has shown that an intention to do good for the society has been added, however, the fact that the economic aspect weighs the most still remains.