IDEAS home Printed from https://ideas.repec.org/a/ers/journl/vxxivy2021i3p663-681.html
   My bibliography  Save this article

Initiating and Defining a Sustainable Project on the Example of Rare Disease Therapy

Author

Listed:
  • Mateusz Juchniewicz
  • Joanna Rzempala
  • Malgorzata Skweres-Kuchta

Abstract

Purpose: The main aim of the article was to present the possibilities of improving the definition of orphan therapy implementation projects using the P5 GPM model in the context of reimbursement decisions. Design/Methodology/Approach: Theoretical research aimed at verifying the applicability of the P5 model in the practice of managing the implementation of orphan therapies. In the first part, the authors presented the essence of defining the project. Then, the background for the implementation of orphan therapies has been presented. Findings: The article presents the long-term impact relating to the limitation of the development of innovation and cooperation, as well as competences of the medical staff and the medical environment, exclusion of the patient and his family from the labour market, the increase in logistics costs related to attempts to reach the treatment, which has an impact on the natural environment. All of this results in a reduction in national welfare. The authors indicated that the use of the P5 model allows for a comprehensive analysis of the environment of orphan therapy implementation projects both in the short and long term, linking them with the goals of sustainable development, which in turn will ensure the correct definition of the project and making investment decisions. Practical Implications: Possibility to use the concept in the health technology assessment process for the purposes of the reimbursement decision, taking into account the sustainable development goals. The P5 model can be helpful in defining these types of projects. Originality/Value: A look at the logic of intervention in case of reimbursement of rare disease therapies from the perspective of the SDGs. Indication of the broad long-term impact of the project from the point of view of all its stakeholders. The considerations presented in the article constitute an introduction to empirical research, primarily in the form of case-studies.

Suggested Citation

  • Mateusz Juchniewicz & Joanna Rzempala & Malgorzata Skweres-Kuchta, 2021. "Initiating and Defining a Sustainable Project on the Example of Rare Disease Therapy," European Research Studies Journal, European Research Studies Journal, vol. 0(3), pages 663-681.
    • Handle: RePEc:ers:journl:v:xxiv:y:2021:i:3:p:663-681
    as

    Download full text from publisher

    File URL: https://www.ersj.eu/journal/2377/download
    Download Restriction: no
    ---><---

    References listed on IDEAS

    as
    1. United Nations UN, 2015. "Transforming our World: the 2030 Agenda for Sustainable Development," Working Papers id:7559, eSocialSciences.
    2. Gilbert Silvius, 2012. "Change the Game: Sustainability in Projects and Project Management," Springer Books, in: Jan vom Brocke & Stefan Seidel & Jan Recker (ed.), Green Business Process Management, edition 127, pages 161-177, Springer.
    Full references (including those not matched with items on IDEAS)

    Most related items

    These are the items that most often cite the same works as this one and are cited by the same works as this one.
    1. Shankar Sankaran & Mattias Jacobsson & Tomas Blomquist, 2021. "The history and future of projects as a transition innovation: Towards a sustainable project management framework," Systems Research and Behavioral Science, Wiley Blackwell, vol. 38(5), pages 696-714, October.
    2. Paulina Schiappacasse & Bernhard Müller & Le Thuy Linh, 2019. "Towards Responsible Aggregate Mining in Vietnam," Resources, MDPI, vol. 8(3), pages 1-15, August.
    3. Pina Puntillo, 2023. "Circular economy business models: Towards achieving sustainable development goals in the waste management sector—Empirical evidence and theoretical implications," Corporate Social Responsibility and Environmental Management, John Wiley & Sons, vol. 30(2), pages 941-954, March.
    4. R. Ebrahimi & S. Choobchian & H. Farhadian & I. Goli & E. Farmandeh & H. Azadi, 2022. "Investigating the effect of vocational education and training on rural women’s empowerment," Palgrave Communications, Palgrave Macmillan, vol. 9(1), pages 1-11, December.
    5. Bárbara Galleli & Elder Semprebon & Joyce Aparecida Ramos dos Santos & Noah Emanuel Brito Teles & Mateus Santos de Freitas-Martins & Raquel Teodoro da Silva Onevetch, 2021. "Institutional Pressures, Sustainable Development Goals and COVID-19: How Are Organisations Engaging?," Sustainability, MDPI, vol. 13(21), pages 1-21, November.
    6. Sagarika Dey & Priyanka Devi, 2019. "Impact of TVET on Labour Market Outcomes and Women’s Empowerment in Rural Areas: A Case Study from Cachar District, Assam," Indian Journal of Human Development, , vol. 13(3), pages 357-371, December.
    7. Maria Sassi, 2020. "A SEM Approach to the Direct and Indirect Links between WaSH Services and Access to Food in Countries in Protracted Crises: The Case of Western Bahr-el-Ghazal State, South Sudan," Sustainability, MDPI, vol. 12(22), pages 1-13, November.
    8. Olga Stepanova & Magdalena Romanov, 2021. "Urban Planning as a Strategy to Implement Social Sustainability Policy Goals? The Case of Temporary Housing for Immigrants in Gothenburg, Sweden," Sustainability, MDPI, vol. 13(4), pages 1-17, February.
    9. Michel, Hanno, 2020. "From local to global: The role of knowledge, transfer, and capacity building for successful energy transitions," Discussion Papers, Research Group Digital Mobility and Social Differentiation SP III 2020-603, WZB Berlin Social Science Center.
    10. Hervé Corvellec & Johan Hultman & Anne Jerneck & Susanne Arvidsson & Johan Ekroos & Niklas Wahlberg & Timothy W. Luke, 2021. "Resourcification: A non‐essentialist theory of resources for sustainable development," Sustainable Development, John Wiley & Sons, Ltd., vol. 29(6), pages 1249-1256, November.
    11. Wilson Charles Wilson & Maja Slingerland & Frederick P. Baijukya & Hannah Zanten & Simon Oosting & Ken E. Giller, 2021. "Integrating the soybean-maize-chicken value chains to attain nutritious diets in Tanzania," Food Security: The Science, Sociology and Economics of Food Production and Access to Food, Springer;The International Society for Plant Pathology, vol. 13(6), pages 1595-1612, December.
    12. Jones, Lindsey & d'Errico, Marco, 2019. "Whose resilience matters? Like-for-like comparison of objective and subjective evaluations of resilience," World Development, Elsevier, vol. 124(C), pages 1-1.
    13. Bin Xue & Bingsheng Liu & Tao Liang & Dong Zhao & Tao Wang & Xingbin Chen, 2022. "A heterogeneous decision criteria system evaluating sustainable infrastructure development: From the lens of multidisciplinary stakeholder engagement," Sustainable Development, John Wiley & Sons, Ltd., vol. 30(4), pages 556-579, August.
    14. Sudheesh Ramapurath Chemmencheri, 2016. "Social Protection as a Human Right in South Asia," Indian Journal of Human Development, , vol. 10(2), pages 236-252, August.
    15. Ingrid Boas & Frank Biermann & Norichika Kanie, 2016. "Cross-sectoral strategies in global sustainability governance: towards a nexus approach," International Environmental Agreements: Politics, Law and Economics, Springer, vol. 16(3), pages 449-464, June.
    16. Joyeeta Gupta & Louis Lebel, 0. "Access and allocation in earth system governance: lessons learnt in the context of the Sustainable Development Goals," International Environmental Agreements: Politics, Law and Economics, Springer, vol. 0, pages 1-18.
    17. Guo, Jiaqi & Wang, Qiang & Li, Rongrong, 2024. "Can official development assistance promote renewable energy in sub-Saharan Africa countries? A matter of institutional transparency of recipient countries," Energy Policy, Elsevier, vol. 186(C).
    18. Kinyondo, Abel Alfred & Ntegwa, Magashi Joseph & Masawe, Cresencia Apolinary, 2022. "Socioeconomic Inequality in Maternal Healthcare Services: The Case of Tanzania," African Journal of Economic Review, African Journal of Economic Review, vol. 10(1), January.
    19. Francesco Bandarin & Enrico Ciciotti & Marco Cremaschi & Giovanna Madera & Paolo Perulli & Diana Shendrikova, 2020. "Which Future for Cities after COVID-19 An international Survey," Reports, Fondazione Eni Enrico Mattei, October.
    20. Thore, Sten, 2022. "Sustainable development goal deficits and the Covid 19 pandemic," Technological Forecasting and Social Change, Elsevier, vol. 174(C).

    More about this item

    Keywords

    Project management; Sustainable Development Goals (SDG); health care system; rare disease management; CLN2.;
    All these keywords.

    JEL classification:

    • I10 - Health, Education, and Welfare - - Health - - - General
    • P46 - Political Economy and Comparative Economic Systems - - Other Economic Systems - - - Consumer Economics; Health; Education and Training; Welfare, Income, Wealth, and Poverty
    • O22 - Economic Development, Innovation, Technological Change, and Growth - - Development Planning and Policy - - - Project Analysis
    • Q49 - Agricultural and Natural Resource Economics; Environmental and Ecological Economics - - Energy - - - Other

    Statistics

    Access and download statistics

    Corrections

    All material on this site has been provided by the respective publishers and authors. You can help correct errors and omissions. When requesting a correction, please mention this item's handle: RePEc:ers:journl:v:xxiv:y:2021:i:3:p:663-681. See general information about how to correct material in RePEc.

    If you have authored this item and are not yet registered with RePEc, we encourage you to do it here. This allows to link your profile to this item. It also allows you to accept potential citations to this item that we are uncertain about.

    If CitEc recognized a bibliographic reference but did not link an item in RePEc to it, you can help with this form .

    If you know of missing items citing this one, you can help us creating those links by adding the relevant references in the same way as above, for each refering item. If you are a registered author of this item, you may also want to check the "citations" tab in your RePEc Author Service profile, as there may be some citations waiting for confirmation.

    For technical questions regarding this item, or to correct its authors, title, abstract, bibliographic or download information, contact: Marios Agiomavritis (email available below). General contact details of provider: https://ersj.eu/ .

    Please note that corrections may take a couple of weeks to filter through the various RePEc services.

    IDEAS is a RePEc service. RePEc uses bibliographic data supplied by the respective publishers.