Towards Fair Access to the Health and Social Protection of People With Rare Diseases in the Republic of Serbia - Perspectives on the Decentralisation of Services
Keywords:
rare diseases, vulnerable groups, patients’ rights, social protection, decentralisation, public policies, qualitative researchAbstract
Starting from the fundamental principle that the attitude towards vulnerable groups and minorities is a measure of the openness of a society and its readiness to facilitate the unhindered realisation of the rights of each individual member, this paper examines the availability of health and social care services to people suffering from rare diseases and their family members. In most of the Republic of Serbia, there are no adequate resources for meeting their needs and realising their various rights, especially those related to access to health and social care services, as indicated by the results of the qualitative research conducted. This significantly affects the deterioration of the social position of both patients and their family members, who take on the greatest burden of caring for the sick. The research that we present in this paper aims, through a combination of theoretical conceptualisation, field research, and public initiatives, to discover, interpret, and propose ways in which the existing framework in the field of health and social care – which is nominally improved – can be improved. Qualitative empirical research was conducted in order to define patterns of access or lack of access to services as well as to formulate proposals for the improvement of public policies that will be sent to decision makers and institutions that are relevant in this area. The search for ways to decentralise the service system, while maintaining the necessary level of expertise in the highly specialised health centres that these diseases require, is still ongoing, and the results of this research offer certain insights for more precise adjustments of public policy measures in this area.
References
Angelis, Aris et al. 2015. Socio-economic burden of rare diseases: A systematic review of cost of illness evidence. Health Policy 119 (7):964–979.
Baldovino, Simone et al. 2016. Rare Diseases in Europe: from a Wide to a Local Perspective. The Israel Medical Association Journal 18(6): 359–363.
Boycott, Kym M et al. 2012. Rare-disease genetics in the era of next-generation sequencing: discovery to translation. Nat Rev Genet. 14 (10): 681–691.
Cohen, Julie S. and Barbara B. Biesecker. 2010. Quality of life in rare genetic conditions: a systematic review of the literature. Am J Med Genet 152A (5):1136–1156.
Cortial, Lucas et al. 2022. “Managing rare diseases: examples of national approaches in Europe, North America and East Asia” Rare Disease and Orphan Drugs Journal. 1, no. 2: 10.
Dodge, John A. 2011. The importance of rare diseases: from the gene to society. Arch Dis Child. 96 (9):791–792.
Đurić, Slađana. 2005. Fokus grupni intervju. Beograd: Službeni glasnik.
Galloway, Alexander R. 2010. “Networks”. In: Mitchell, William J. T. and Mark B.N. Hansen (eds.) Critical Terms for Media Studies. Chicago, IL; London: University of Chicago Press, 280–296.
Haffner, Marlene E. et al. 2002. Two decades of orphan product development. Nature reviews. Drug discovery vol. 1,10 (2002): 821–825.
Jarić Isidora i Milenković Miloš (2016) Mapiranje mesta potencijalne diskriminacije iz perspektive osoba obolelih od retkih bolesti i članova njihovih porodica – rezultati kvalitativnog istraživanja u: Sjeničići i Milenković (ur.) (2016), 179–238.
Jarić, Isidora. 2017. Roditeljstvo pod rizikom: Sociokulturna analiza stigmatizacije obolelih od retkih bolesti, Filozofski fakultet, Beograd.
Jarić, Isidora. 2022. Obrazovanje za saosećanje, Beograd: Naučno društvo za istoriju zdravstvene kulture i Centar za saradnju sa EU Filozofski fakultet Univerzitet u Beogradu.
Klajn Tatić, Vesna. 2014. „Etička i pravna pitanja u vezi sa odlučivanjem o finansiranju istraživanja i razvoju lekova siročića“. U: Hajrija Mujović Zornić (ur.), 137–151.
Merker, Vanessa L et al. 2018. Increasing access to specialty care for rare diseases: a case study using a foundation sponsored clinic network for patients with neurofibromatosis 1, neurofibromatosis 2, and schwannomatosis. BMC health services research vol. 18(1): 668.29
Mujović Zornić Hajrija (ur.) (2014) Ljudska prava i vrednosti u biomedicini – aspekt odlučivanja u zdravstvu. Beograd: Insitut društvenih nauka.
Sjeničić Marta i Marko Milenković (ur.) (2016) Društveni i pravni položaj osoba sa retkim bolestima i njihovih porodica u Srbiji. Beograd: Institut društvenih nauka.
Sjeničić Marta i Milenković Marko. 2015. Zdravstveno zbrinjavanje osoba koje boluju od retkih bolesti – zakonodavne promene. Pravni život 64 (9). pp. 395–408.
Tingley, Kylie et al. 2018. Using a meta-narrative literature review and focus groups with key stakeholders to identify perceived challenges and solutions for generating robust evidence on the effectiveness of treatments for rare diseases. Orphanet journal of rare diseases vol. 13(1): 104.
Tonkiss, Fran. 1998. “Analyzing discourse“. In: Clive, Seale (ed.). Researching Society and Culture. London: Sage Publications, 245–260.
Vilig, Karla. 2016. Kvalitativna istraživanja u psihologiji. Beograd: Clio.
Waldboth, Veronika et al. 2016. “Living a normal life in an extraordinary way: A systematic review investigating experiences of families of young people’s transition into adulthood when affected by a genetic and chronic childhood condition.” International journal of nursing studies 62: 44–59.
Walewski, José L. et al. 2019. How many zebras are there, and where are they hiding in medical literature? A literature review of publications on rare diseases, Expert Opinion on Orphan Drugs 7(11): 513–519.
Yates-Doerr, Emily. 2020. Reworking the social determinants of health: Responding to material-semiotic indeterminacy in public health interventions. Medical Anthropology Quarterly 34(3): 378–397.
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