Inherited blood disorders, globalisation and the promise of genomics: An Indian case-study
Lead Research Organisation:
University of York
Department Name: Health Science
Abstract
Sickle cell and thalassaemia, forms of inherited blood disorders (IBD), classified by the WHO under 'prevention and management of inherited birth defects', have recently been defined as an emergent global health crisis. The pattern of recessive inheritance implies that babies who inherit two copies of a mutant gene (from both parents) will have a serious blood disorder, needing long term treatment and care; while carriers who inherit only one copy will not have the disease. A much higher incidence poses significant healthcare challenges in low and middle income countries, especially sub-Saharan Africa and India. India is estimated to have the largest number of carriers of IBD in the world, around 42-45 million; where approximately 22,500- 37,000 babies with IBD are born each year. A significant proportion are born in households with little or no access to healthcare, especially in the rural, poor, marginalised ethnic and 'tribal' communities. Despite cheap diagnostic tests and treatments, including curative stem cell transplants, available across public and private sectors, only 5-10 percent of children receive optimal care in India. There is little research examining the social and ethical reverberations of carrier screening, especially of pregnant women, and the use of prenatal diagnosis and termination of affected foetuses, as preventive interventions as a means of 'prevention'. Further, it is imperative to examine how, given the widespread practice of sex selective abortions and poorly regulated markets, an appropriation of genetic technologies by state, public as well as private enterprise might further exacerbate existing structural inequalities related to ethnicity, caste, gender and disability.
This 40 month long, Indian case-study will provide a comprehensive analysis of the social and ethical reverberations of policies and practices surrounding the treatment and 'prevention' of IBD, within the context of globalisation and the promise of genomics in reducing health inequities in the global South. The main aim of our research is to relate these global debates to local forms of engagement and therapeutic citizenship reflected in the practices of NGOs helping people (potentially) affected by these disorders in the rural, poor and marginalised communities. To contextualise our empirical work, we will first review literature from medical anthropology, sociology, global health policy and ethics to help refine the questions to be explored through a multi-sited ethnography. Fieldwork across four sites will involve main actor interviews, shadowing NGOs, community focus group discussions and practitioner interviews, as well as in-depth interviews with patients, carriers and two main carers in 80 households, from rural/semi urban poor areas and 10 households from a higher socio-economic, urban background. These households will be visited three times over 12-14 months. Researchers will use a topic guide for interviews on how IBD are recognised and treated, and decisions related to risk and long term care, and maintain health diaries for each family with a record of illnesses, health expenses and decisions related to health.
The research will provide theoretical insights from medical anthropology/ sociology/ bioethics and the empirical findings to inform policy and practice on the far reaching social and ethical ramifications of the use of genomic technologies as a means of 'prevention' of recessive gene disorders in particular, and the intersections between genetics, ethnicity/ 'race', gender, kinship, disability and citizenship at a broader level across South Asia. Further, the project will provide methodological insights into a model of community engagement, where the local users and community organisations are intrinsic to the conception and execution of the research as well as the recommendations based on the research, to ensure that they have a stake and benefit from the dissemination plan.
This 40 month long, Indian case-study will provide a comprehensive analysis of the social and ethical reverberations of policies and practices surrounding the treatment and 'prevention' of IBD, within the context of globalisation and the promise of genomics in reducing health inequities in the global South. The main aim of our research is to relate these global debates to local forms of engagement and therapeutic citizenship reflected in the practices of NGOs helping people (potentially) affected by these disorders in the rural, poor and marginalised communities. To contextualise our empirical work, we will first review literature from medical anthropology, sociology, global health policy and ethics to help refine the questions to be explored through a multi-sited ethnography. Fieldwork across four sites will involve main actor interviews, shadowing NGOs, community focus group discussions and practitioner interviews, as well as in-depth interviews with patients, carriers and two main carers in 80 households, from rural/semi urban poor areas and 10 households from a higher socio-economic, urban background. These households will be visited three times over 12-14 months. Researchers will use a topic guide for interviews on how IBD are recognised and treated, and decisions related to risk and long term care, and maintain health diaries for each family with a record of illnesses, health expenses and decisions related to health.
The research will provide theoretical insights from medical anthropology/ sociology/ bioethics and the empirical findings to inform policy and practice on the far reaching social and ethical ramifications of the use of genomic technologies as a means of 'prevention' of recessive gene disorders in particular, and the intersections between genetics, ethnicity/ 'race', gender, kinship, disability and citizenship at a broader level across South Asia. Further, the project will provide methodological insights into a model of community engagement, where the local users and community organisations are intrinsic to the conception and execution of the research as well as the recommendations based on the research, to ensure that they have a stake and benefit from the dissemination plan.
Planned Impact
To maximise impact of the research, we will use a multi-pronged dissemination strategy - including workshops, focus groups, written summaries/ posters in local languages, newspaper articles, a summary of findings and recommendations for policymakers and healthcare practitioners, as well as peer reviewed journal articles and conference presentations for academic and policy audiences. To ensure that the local community participants and NGOs can benefit from dissemination, extensive consultations with local stakeholders is an important feature of this plan. The applicants' previous experience and longstanding commitment to addressing health inequalities broadly and social implications of sickle cell and thalassaemia in particular have generated trans-national collaborative relationships that will ensure wider dissemination. The three main stakeholder groups that can benefit from our findings and community engagement are: the NGOs, the families and marginalised ethnic communities affected by IBD and the focus of public health intervention, and policy makers and healthcare practitioners and research organisations at local, national and international levels.
Our collaborators, SCS India and PRAYAS will be involved in the research from the beginning and help us with dissemination. The NGOs can benefit by increasing their capacity to utilise the findings and engaging directly with the ethically contentious issues posed by (lack of) particular health interventions at a local level. We will facilitate links with other research networks in the UK, Nepal, Nigeria and Brazil. Hence, successful models of NGO-state- practitioner engagement can be shared across (often competing) sickle cell and thalassaemia communities as well as in other health areas across South Asia. A successful legal campaign led by SCS India for allowing students with sickle cell anaemia extra time in Board examination is a good example. Four workshops have been arranged to discuss the main findings and potential policy and practice recommendations, and how to translating a summary of our findings and recommendations into the vernacular using written and/or alternate formats/posters, signposting useful services and contacts. These can be used by community members as well as healthcare practitioners for seeking/providing information about IBDs and services (village, district, state). Local intellectuals and academics will be involved in highlighting IBD in vernacular press, local radio and television channels.
Second, four community focus groups have been planned with the help of the NGOs to discuss the findings and recommendations with local stakeholders, including younger and older men and women, potentially affected by IBD as well as family carers. The findings will be discussed in an accessible local language to ensure that local priorities are reflected in the recommendations to be incorporated into our final written summary for policy and practice.
In order to provide a resource for policy and healthcare practitioners, a summary of main findings and recommendations will be written and disseminated at a national seminar in Delhi, where the major stakeholders in public health policy and practice at national and international levels will be invited. ISERDD, Prayas and AJ have extensive links with several health organisations ensuring widest possible, electronic distribution of this summary. A link to the English and vernacular summaries will be accessible on the research website.
Finally, an international seminar at Sussex will discuss the theoretical, methodological and policy contributions from the research. Our links with CGHH, York, will help engage with the WHO on current resolution on 'prevention and management of birth defects'. The academic and policy issues will be disseminated through publishing in a broad range of peer reviewed journals, and the monograph aimed at social scientists, clinicians as well policymakers.
Our collaborators, SCS India and PRAYAS will be involved in the research from the beginning and help us with dissemination. The NGOs can benefit by increasing their capacity to utilise the findings and engaging directly with the ethically contentious issues posed by (lack of) particular health interventions at a local level. We will facilitate links with other research networks in the UK, Nepal, Nigeria and Brazil. Hence, successful models of NGO-state- practitioner engagement can be shared across (often competing) sickle cell and thalassaemia communities as well as in other health areas across South Asia. A successful legal campaign led by SCS India for allowing students with sickle cell anaemia extra time in Board examination is a good example. Four workshops have been arranged to discuss the main findings and potential policy and practice recommendations, and how to translating a summary of our findings and recommendations into the vernacular using written and/or alternate formats/posters, signposting useful services and contacts. These can be used by community members as well as healthcare practitioners for seeking/providing information about IBDs and services (village, district, state). Local intellectuals and academics will be involved in highlighting IBD in vernacular press, local radio and television channels.
Second, four community focus groups have been planned with the help of the NGOs to discuss the findings and recommendations with local stakeholders, including younger and older men and women, potentially affected by IBD as well as family carers. The findings will be discussed in an accessible local language to ensure that local priorities are reflected in the recommendations to be incorporated into our final written summary for policy and practice.
In order to provide a resource for policy and healthcare practitioners, a summary of main findings and recommendations will be written and disseminated at a national seminar in Delhi, where the major stakeholders in public health policy and practice at national and international levels will be invited. ISERDD, Prayas and AJ have extensive links with several health organisations ensuring widest possible, electronic distribution of this summary. A link to the English and vernacular summaries will be accessible on the research website.
Finally, an international seminar at Sussex will discuss the theoretical, methodological and policy contributions from the research. Our links with CGHH, York, will help engage with the WHO on current resolution on 'prevention and management of birth defects'. The academic and policy issues will be disseminated through publishing in a broad range of peer reviewed journals, and the monograph aimed at social scientists, clinicians as well policymakers.
Publications
Chattoo S
(2022)
How can sociology help address a global health challenge?
in Futurum Careers
Chattoo S
(2018)
Inherited blood disorders, genetic risk and global public health: framing 'birth defects' as preventable in India.
in Anthropology & medicine
Unnithan M
(2023)
'Only parents can understand the problems and needs of children with thalassaemia': parental activism for thalassaemia care in Northern India.
in Anthropology & medicine
| Description | Policy and practice framing and the role of NGOs ? Each year, 22,500-27,000 babies affected by beta thalassemia and sickle cell disorders are born across India. Despite cheap and easily available diagnostics and treatments, only 15-20 percent of patients might be receiving adequate treatmen, resulting in related morbidity and mortality that can be avoided. Non-governmental organisations (NGOs), supported by clinicians, have played a key role in lobbying for access to subsidised medical care and in influencing policy initiatives at a central level. ? A major focus of The National Guidelines on Prevention and Control of Haemoglobinopathies (2016) is on screening and prevention rather than equity of access and quality of long-term care. Poor implementation and dissemination of treatment guidelines in resource constrained public hospitals remains a major issue, reflecting gaps between policy and practice. ? The Rights of Persons with Disability (amendment of RPWD) Act 2017 was widely hailed as a watershed moment in the struggle for the rights of sickle cell and thalassaemia patients. However, patients' organisations and some clinicians critiqued the assessment tools used for certifying 'benchmark disability (the cut off point for accessing benefits) as being premised on models of physical impairment ? Public health campaigns for premarital screenings and prenatal testing, overtly aiming to prevent new births of children with these disorders, seem to provide contradictory messages about countering stigma and disablist attitudes in the wider communities. Not only can such messages reinforce stigma of being a carrier or indeed a patient, the future prospects of girls are likely to suffer even more, especially in communities where structurally the odds are stacked against them. Access to long term care for patients and families ? In the public sector, longitudinal data suggests that overall access to diagnosis, free blood and chelation medicines for thalassaemia patients has significantly improved over the past 7-8 years. However, parents and adult patients struggled to maintain a safe regimen of care over time. A lack of access to 'packed cells', for instance, forced some to travel between 100- 300 kms for monthly transfusions to a larger hospital (one site). Three families had immigrated and settled in a city due to their child's condition. ? Treatment and long-term care for sickle cell patients, unless they happen to live close to a dedicated SCD unit, can be quite rudimentary. This is despite extensive screening and quick access to diagnostic tests in rural settings. ? There is a huge variation in treatment protocols between clinicians and treatment centres within a small geographical area. Patients seem to be prescribed what is available free at a hospital, at a certain time, rather than what they may need. For instance, hydroxurea is often prescribed to adult sickle cell patients in a painful crisis for a few days/weeks, or on alternate days, despite established clinical protocols and advice available from local clinicians a telephone call away, which would question such an approach. ? Despite significant clinical differences between the two conditions and prognostic variability, clinicians across the board provided a bleak prognosis to the parents about their child, saying they are not expected survive beyond teens or early 20s. This perception exacerbates the wider stigma associated with disease/death, whilst seriously affecting parental expectations and the future life chances of a child. ? Between 30-40 percent of children suffering from these disorders may be taken off school very early or discontinue education, especially in rural and urban/poor settings. Parents/grandparents, anticipating a brief life, gave in easily if a child suffering from pain or fatigue did not want to attend school. Dropping out of school/education has an obvious adverse impact on employment opportunities as well as effecting the young persons' emotional and social well-being. ? Contrary to our expectations and anecdotal evidence, we found no evidence of a gender bias in parental attitudes towards the medical care and education of their daughters and sons. Even in Rajasthan with an adverse gender ratio, or in the poorest of families, in remote/rural areas of Maharashtra, with limited access to transport and healthcare, parents went from one treatment centre to another, approaching different kinds of healers in pursuit of a cure or relief for their child, irrespective of whether they were boys or girls Transition to adulthood, adolescence and pregnancy ? Setting up of thalassaemia transfusion wards, in response to local patients' organisations supported by key clinicians, was perceived as a positive step. Parents and young adults developed a sense of kinship and caring, and an important network of experiential knowledge and support. However, these wards did not ensure continuity of care across specialities in case of an emergency admission, when a thalassaemia or sickle cell patient may not 'belong to' any speciality due to their specific co-morbidities. This pushed families to seek private care. ? One of the major issues across the board was the absence of a long-term care plan across sites, to equip parents to try and prevent secondary health issues and look for signs of an imminent crisis. Assumptions of a poor prognosis can affect low parental expectations about their child's health, which can lead to severe disabilities and poor outcomes and even, what can be considered, preventable deaths. Sickle cell patients, in particular, might see a healthcare practitioner only when they have a crisis or a serious health event, not realising that their hip-necrosis took years to set in and could be treated, if identified sooner. ? Transitioning to 'adolescence' was a major issue where parents and young adults had to fend for themselves when seeking advice and appropriate care. Gender played a significant role here. Some clinicians advised parents and patients that having periods was not important, since getting married and having children was not their future. ? A similar negative attitude of reproductive options among professionals was reflected in the experience of women who were strongly advised by their clinicians against getting married, having children or terminating if pregnant, since pregnancy can be difficult for women who have thalassaemia or SCD. ? Finally, emotional and mental health issues faced by sickle cell and thalassemia patients are grossly neglected by current healthcare provision. |
| Exploitation Route | The model of collaborative research has been one of the major succeses of this research. This can be used by academic and non-academic actors as part of their researrch methodology. One of the main contributions of this research has been to suggest ways of improvising and finding solutions to weak policy and practice links at the ground level. This can be tranlated to high and low income settings. For instance, a single question of multiplicity of treatment protocols was linked to both governance and knowledge making and sharing practices in local professional settings. The building bridges workshop (outcome) led us to the idea of a minimally safe practice toolkit as a means of addressing the gao between idelaised protocols on paper that are simply not feasible nor accessible to practioners in remote, rual settings. The soluton was sought in trying to infeunce local knowledge of practitioners and adult patients/ parents (toolkits) - developed in collaboration with both - rather than trying to influence policy. Building a pool of local evidence (collective knoledge about a conditio/ social issue) , can eventually feedback into the policy loop (bottom up - scaling up) approach. |
| Sectors | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice,Other |
| Description | Based on the findings and discussions with a core group of clinicians, parents/carers and patients, we identified a need for developing a safe practice toolkit that would reflect simplified clinical and practical information for practitioners in how to look after their patients with sickle cell anemia in resource poor settings. The content takes examples of good practice form local/ regional practices that we know can be followed easily in any similar setting (Nepal, Bangladesh/ Pakistan or sri Lanka). Accordingly, two toolkits for health care practitioners, parents/ carers and adult patients respectively, were formulated. The toolkit for families has been translated into 8 regional languages (including a version in Nepali). Where relevant, audio and video recordings are uploaded, highlighting important information or skills patients and carers can use to improve long term outcomes of care. For instance, one of the videos demonstrates how to make smaller doses of hydroxurea that is still sold in an adult dose in the market. Another video teaches parents to palpate the spleen of a child so that they can mark a growth that is abnormal, and seek immediate help before it turns sinister. An online version of both these toolkits with links to extra resources is available online, and accessible free of charge to anyone in the world (ASHWINI website). |
| First Year Of Impact | 2023 |
| Sector | Communities and Social Services/Policy,Healthcare,Government, Democracy and Justice,Other |
| Impact Types | Societal,Policy & public services |
| Description | Building bridges |
| Geographic Reach | Asia |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Description | A 'minimally safe-care practice' tool-kit for long term conditions: improvising protocols in poorly resourced, rural healthcare settings in India |
| Amount | £19,200 (GBP) |
| Funding ID | ESRC Impact Acceleration Account |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 06/2021 |
| End | 03/2022 |
| Description | Departmental workshop grant |
| Amount | £3,100 (GBP) |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 11/2019 |
| End | 04/2020 |
| Description | Inherited Blood Disorders: An Indian Case-Study |
| Amount | £15,150 (GBP) |
| Funding ID | UoY Covid-19 Contingency grant (1737506) |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2021 |
| End | 05/2021 |
| Description | Why do we need social scientists to help us understand the real-life experiences of genetic disorders? |
| Amount | £8,699 (GBP) |
| Funding ID | G0082001 |
| Organisation | University of York |
| Sector | Academic/University |
| Country | United Kingdom |
| Start | 01/2022 |
| End | 04/2022 |
| Description | 'Disentangling the History of Blood and Othering: A Relational Materialist Approach to Decolonising Medical Museums' ( 2022-2025). |
| Organisation | Thackray Museum |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | SC with Jieun Kim, Leeds and Thackray Medical Museum, Leeds, secured a WhiteRose/ AHRC fully funded PhD Fellowship - Disentangling the History of Blood and Othering: A Relational Materialist Approach to Decolonising Medical Museums' ( 2022-2025). Focusing on Thackray Museum of Medicine's collections around blood technologies, this project takes a relational materialist approach to exploring the potential of medical objects in unsettling historically rooted racial imaginaries. Combining collections-based ethnographic research at Thackray, oral history gathering and co-creation work with local minoritised communities on memories and experiences of specific blood technologies, this project aims to open new pathways for decolonising medical museums. |
| Collaborator Contribution | JK from Leeds lead the bid and developed a working partnership with Thackray Museum. Thackray are jointly supervising the PhD with JK and SC and are keen to use more ethnographic methods of engaging the local minoritised communities in rethinking their own practices reflecting the views of the community members. This opens up a new methodological space that will potentially contribute to the wider vision of decolonising history of race' and blood from the vantage point of the academy as well as the local museum of medicine. This process takes community engagement with the objects/ collections held at the Museum as its starting point that will feedback into the final outcomes of this doctoral project. |
| Impact | A fully funded PhD fellowship funded by the WhiteRose and AHRC (WRoCA) |
| Start Year | 2022 |
| Description | 'Disentangling the History of Blood and Othering: A Relational Materialist Approach to Decolonising Medical Museums' ( 2022-2025). |
| Organisation | Thackray Museum |
| Country | United Kingdom |
| Sector | Charity/Non Profit |
| PI Contribution | SC with Jieun Kim, Leeds and Thackray Medical Museum, Leeds, secured a WhiteRose/ AHRC fully funded PhD Fellowship - Disentangling the History of Blood and Othering: A Relational Materialist Approach to Decolonising Medical Museums' ( 2022-2025). Focusing on Thackray Museum of Medicine's collections around blood technologies, this project takes a relational materialist approach to exploring the potential of medical objects in unsettling historically rooted racial imaginaries. Combining collections-based ethnographic research at Thackray, oral history gathering and co-creation work with local minoritised communities on memories and experiences of specific blood technologies, this project aims to open new pathways for decolonising medical museums. |
| Collaborator Contribution | JK from Leeds lead the bid and developed a working partnership with Thackray Museum. Thackray are jointly supervising the PhD with JK and SC and are keen to use more ethnographic methods of engaging the local minoritised communities in rethinking their own practices reflecting the views of the community members. This opens up a new methodological space that will potentially contribute to the wider vision of decolonising history of race' and blood from the vantage point of the academy as well as the local museum of medicine. This process takes community engagement with the objects/ collections held at the Museum as its starting point that will feedback into the final outcomes of this doctoral project. |
| Impact | A fully funded PhD fellowship funded by the WhiteRose and AHRC (WRoCA) |
| Start Year | 2022 |
| Description | ASHWINI - Developing a 'minimally safe-care practice' tool-kit for long term conditions |
| Organisation | ASHWINI |
| Country | India |
| Sector | Learned Society |
| PI Contribution | The idea for a toolkit emerged during discussions a the Nagpur building Bridges workshop, following on from SC's summary of main findings and recommendations based on the current ESRC/ IBD project. SC followed up the links with ASWHINI and other new collaborators (Kerela and Gujarat), and with KA's inputs developed the protocol and methods underpinning this collaboration. One of the significant contributions here is the sheer perseverance needed to bring smaller sickle cell community groups, often run by a group of individuals/ parents, and clinicians from different geographical areas of India, to engage critically with local management practices of care. The idea of a tool-kit and developing their own capacity through training with the help of local and regional networks is simple and achievable. SC's intellectual input has been in terms of rethinking the relationship between academic research outputs and their direct impact on policy. Especially in India, where due to a federal system of health governance and very limited resources in the rural and even urban public healthcare settings, the gap between public health policy and guidelines issued at a central level (Union Ministry of Health) might have little or no impact on practices at a local level. As revealed by the ESRC/ IBD findings, even doctors within the same hospital might use different protocols for clinical care due to several reasons. Hence, the involving local collaborations to think more critically of their own practice and share examples of good practice at a local/ regional level, might have a greater positive impact on changing practice. This has been the main contribution of the team. |
| Collaborator Contribution | ASHWINI Sickle Cell Centre brought to the table their experience of using participatory methods in public health and a long history of treating a significant number of patients and families affected by sickle cell, with excellent longitudinal outcomes of care with low mortality figures - contrary to the policy rhetoric of 70% of sickle cell patients dying before they reach the age of five. They train and involve local villagers and adivasi (tribal) people in their community health services and also have a track record of research. They will play a key role in developing the questionnaires and training the researchers in administering the assessment tools and monitoring the impact of the tool-kits at an organisational level. . |
| Impact | To be reported in 2022 when the project is completed. Due to the disruptions caused by the COVId- pandemic, the start date of the project has been deferred to Summer 2021. |
| Start Year | 2018 |
| Description | Building Bridges: SCD Capacity Building Workshop |
| Organisation | Government Medical College Nagpur |
| Country | India |
| Sector | Academic/University |
| PI Contribution | Sangeeta Chattoo ecured a small Departmental (DRC/Sociology/ York) grant 3,100 GBP, to facilitate the workshop, in response to the need expressed by Sickle Cell Nepal and different organisations and individual parents and patients that she has been working with, during the course of the IBD research since 2016-17. Given a shoe string budget, all the admin from the York side, including collating a list of potential invitees, contacting them, arranging for travel and accommodation was done by SC; Followed by discussion with each regional team to shape the programme, invite speakers and representative from teams, finalise the Programme with the help of Dipty Jian (GMC, Nagpur) and Priyankar Chand (Sickle Cell Nepal). This has been the first workshop to bring a diverse group of community organisations and clinicians under one roof, along with patients and parents, apart form the GSCDN conference in Bhbheneswar which was entirely lead and run by clinicians and scientists. |
| Collaborator Contribution | GMC contributed majorly to the success and smooth running of the workshop. Dipty Jain, HOD, Paediarics, GMC Nagpur gave her time generously, and arranged admin support (payed for by UoY,) and subsidised the costs by offering practical help in arranging the printing of material, venue, catering and so on. She also helped in inviting the Dean (an bone and joint specialist interested in SCD) to the meeting which adds a further link in the network o specialists connected through the workshop. The venue and IT allowing a virtual call with one of the delegates, nadlizve streaming of the event to all the medical colleges in Maharashtra. |
| Impact | Building Bridges: A Brief Report Background and Summary The South Asia region has the second highest regional burden of sickle cell disorders (SCD), following Sub-Saharan Africa. India has the second highest burden of sickle cell disease incidence out of all countries with an estimated 44,425 children born each year with the disorder. Despite such statistics, the region severely lacks coordinated policy-aimed community based platforms and research sharing initiatives across community and non-governmental organisations working to support SCD patients, and improve clinical outcomes of care. One of the main issues is to think strategically beyond a current policy focus on screening within communities (to identify/ diagnose patients and carriers) is to plan for long term care and social support, as the life expectancy of the children born with these disorders increases. Originally, the idea of the workshop was to facilitate knowledge sharing and capacity building across Nepal and SC's local research collaborators in Maharashtra. It is worth noting that the Central government in Nepal are in the process of developing regional services for SCD, and often seek health policy evidence from India. Over the course of the ESRC/IBD research, it soon emerged that SCD continued to suffer from an invisibility in national policy frameworks and larger debates and lobbying for funding at a national level in India. Health is largely a matter of legislation for individual states within the Union (apart from certain national programmes, such as HIV/AIDS, TB and polio eradication). It is difficult to implement policies or guidelines at a local level without the commitment and allocation of resources by the state health authorities. As we learnt during the workshop, community organisations working across regions or even within the same/ neighboring state may not know of each other's work. Building Bridges, a two-day long capacity building workshop for community organisations and clinicians working with or supporting children and adults with sickle cell disorders (SCD), was a collaborative effort of the University of York, Government Medical College Hospital, Nagpur and Sickle Cell Nepal (8TH and 9TH November 2019). Over 50 participants took part in the event, including patients, physicians, community organisation representatives and researchers from seven different states of India (Maharashtra, Chhattisgarh, Tamil Nadu, Odisha, Kerala, Rajasthan, and Gujarat) and the Tharu region in Nepal. The event was funded by a small internal grant from York (Sociology) and hosted at Government Medical College Nagpur, home to one of the pioneering pediatric sickle cell Units in India, led by Professor Dipty Jain,. The main objectives of the workshop were: i) To bring together smaller non-governmental/ community-based organisations, and those involved in providing care for children and adults with sickle cell disorders, from different parts of India and Nepal ii) To identify the challenges of seeking and providing appropriate, long term care for sickle cell patients in resource poor, rural, remote and Adivasi (tribal) areas iii) To share models of good practice and effective care which can improve clinical outcomes and reduce morbidity and mortality in these patient populations iv) To form a self-sustained regional network across India and Nepal, working towards achieving these objectives in the long term. Expected Outcomes: i) Identify a structure for the self-sustained national network of sickle cell (hospital and community) based organisations; and designate regional/ state leads who will co- ordinate activities in future. ii) Develop a plan for sharing knowledge, technical expertise and policy briefs relevant to improving long term outcomes for sickle cell patients (within India, across India and Nepal). iii) Facilitate laboratory-based training and sharing of clinical expertise and protocols, using mobile and electronic technologies where necessary (across India, across India and Nepal). iv) Plan a long-term strategy for identifying goals, action plans and a formal office structure with a view to becoming a self -sustained pressure group for the rights of children and adults with sickle cell disorders across the region. Workshop Themes First half of Day 1 was largely devoted to introductions and presentations by various teams from each region, followed by a discussion on several issues ranging from certification of disability, laboratory techniques and diagnostic tools, pediatric care, long term care, treatment protocols, social care and genetic counseling, as well as current policies related to carrier screening and prevention. One common and important thread that emerged was on what constitutes evidence underpinning local practice. It was clear that different local practices/ protocols reflect 'what is available' and 'what works' in local organisational settings, given the severe resource constraints within which they operate. National Guidelines for haemoglobinopathies, issued by the central governments in both India and Nepal, seem to have little or no bearing on these practices (for reasons identified above). At the same time, some teams followed evidence from the USA (e.g. prescribing hydroxurea following diagnosis at birth, whilst disregarding locally validated protocols recognised nationally and internationally for low and middle -income settings (e.g. Jain's clinical trial based protocol of a fixed, low dose hydroxurea being used in trials in parts of Africa). One of the clinicians still prescribed soda mint wit folic acid and pain killers to all his sickle cell patients - without realising or questioning the fact that nobody else prescribes soda mint any more. Two things stand out, sifting through the din of differences: i) patients might be prescribed 'a new drug' doing the rounds as an when it is in supply at a public health facility, not necessarily because s/he needs the medication. Clinicians, at times, stick to a belief about a medication as being therapeutic where there is little else to offer their patients. Folic acid (prescribed routinely to sickle cell patients) and soda mint, campaigning for good 'quality folic acid' - since there is little else that they can offer their patients as therapy /care. Finally, there is unequivocal support for prevention and eradicating sickle cell for India - as a means of avoiding deaths and suffering in a milieu where most patients and clinicians struggle to access or provide basics of healthcare in the rural / remote areas. Discussion over the two days revolved round: 1) Diagnostic Technologies Some of the participants wanted to identify the best methods of diagnosis at the community level, and how to tap into the diagnostic services available in larger facilities (e.g. District hospitals, teaching and research institutions). Overall, in Nepal, diagnosis is solely based on high performance liquid chromatography (HPLC), whereas community level solubility test is widespread in India supplemented (at places) by HPLC, for a confirmatory result. The latter is important for differentiating between heterozygous and homozygous cases of sickle cell and to identify thalssaemia and other haemoglobin variants. Solubility test, based on a drop of blood, is cheap and easy to perform in different settings and needs little training for the field staff. Whilst the outcomes of newborn screening for early intervention and long-term outcomes is gold standard at some centres (GMCH, Nagpur, Sewa Rural, Gujarat, and ASHWINI, in Tamil Nadu), it requires investment in a specific machine and technical input. 2) Treatment regimens and long-term management • Apart from the prescription cheap, generic prescription of folic acid provided at remotest state health facility, there were significant differences in what constituted standard treatment across teams and across regions. Heated discussions ensued on the use of prophylactic antibiotics (up to the age of five in the USA and India but for life in the UK), and vaccines. What is prescribed for patients depends largely on where they live, which treatment facility they access routinely. Apart from the three main, larger teams, antibiotics and vaccines are not prescribed routinely to paediatric patients. Adult patients who have had their spleen removed might only be prescribed antibiotics for a couple of weeks (as would other patients), rather than for a longer protective phase. • Hydroxyurea the primary drug used to protect against the impact of vaso-occlusive events and known to reduce painful crises in the long term. In South Asia a separate "informal" guideline has been adapted for the use of hydroxyurea compared to guidelines in North America or Europe. The current practice in South Asia recommends prescribing hydroxyurea at 10mg/kg for only severe cases, where severe cases are defined as patients who have three or more severe incidents in a year (strokes, vaso-occlusive crisis, severe anemia, other cases that require hospital admissions). Furthermore, unlike cases originating in Sub-Saharan Africa, SCD in South Asia is characterized by high levels of fetal hemoglobin, which alleviates the severity of the disease. Given that the drug can have serious side effects, patients need regular monitoring by a clinician who understands how it works. There was little understanding of how to monitor and when to prescribe this drug among most of the participants (apart from those who have pioneered its use in India and will not prescribe a medication unless it is trialed locally for its efficacy). 3) Curative Options • Even though the option for stem cell/bone marrow transplants as the only curative option exists within the region, due to the high costs associated with the procedure, it remains out of reach for most patients of SCD. State subsidised transplants are widely recommended for thalassaemia patients (also picked up in the ESRC/ IBD research). It seems that several assumptions about sickle cell being of a milder haplotype (largely due to high fetal haemoglobin levels associated with milder phenotypes), and the overall relative invisibility of sickle cell at a policy level, creates a discursive space within which stem cell transplants are generally not considered appropriate for the Indian sickle cell patients (public sector). CMC Vellore Hospital, for instance, one of the oldest transplant units in India, has been a popular option for bone marrow transplants for thalassemia patients from both Nepal and India. Needless to say, the booming private industry of cord blood/stem cell banks widely advertise such cures for sickle cell patients and encourage people to donate stem cells as a 'gift of lie', generating their own stem cell registers catering to national and international markets. 4) Community Engagement • While many hospitals have outreach teams to engage with an follow up patients in the communities, the larger goals of community-focused and hospital-based care (and research) remain different. A certain overlap between geographical region and genetic communities reflects in the higher incidence of SCD in certain adivasi/tribal/caste communities across India and Nepal. Without getting into the complex details of the colonial, bureaucratic purpose and classificatory boundaries of 'scheduled tribes' and 'scheduled castes', most patients representing these communities are rural, poor farmers who might travel internally or between Southern Nepal and Norther- Eastern border of India for work or medical care. Despite free access to healthcare in the public sector, out of pocket expenditure on health is the most factor for a debt spiral, pushing people to live below the poverty line. • Despite such challenges and incredible health inequalities, examples of good practice were also identified. Several small non-governmental organisations and charity-hospitals provide excellent care and support to sickle cell patients in the community, and have acted as a successful lobby influencing policy at a state/ national levels. The Nagpur based Sickle Cell Society of India has successfully lobbied the Maharashtra State Government to provide disability benefits to SCD patients within the state. There however remains a lack of engagement when it comes to issues of ethics and patient rights. Many states in India have prioritized the "prevention" of sickle cell disease, such programs often do not reflect critically about the right to privacy of patients, the restriction of genetic information to essential health service providers, and the ethics of "prevention" for a genetic disorder. Resources, materials, and staffing for genetic counselling are limited throughout the region. Often, poorly trained and underpaid community workers perform several roles ranging from laboratory technician, to outreach worker to genetic counsellor. • Feedback: As noted in her closing remarks by DJ, this meeting was long overdue. This was the first opportunity for most of the organizations to meet and network with similar organizations from different areas of India and Nepal. Even though some of the clinicians have opportunities to attend national and international conferences, it was a novel platform to have doctors, patients, parents and activists on the same platform to discuss pressing issues of common interest. Some of the participants were surprised to note that a similar organization existed literally across their geographical border without their knowledge (ASHWINI form Gudalur, TN and the Wayanad Sickle Cell Society in Wayanad, Kerela. Participants indicated that they would have appreciated an opportunity for field visits to nearby community-led initiatives, more space allocated for discussions rather than presentations, and more time to discuss patient rights and patient-led initiatives. Participants also expressed a keen interest in a coordinated platform to advocate for SCD patients at a regional and global level. Planned future steps to sustain the network: i) The South Asia Sickle Cell Network • At the end of the workshop, all participants unanimously agreed to form a regional coalition. Currently a group email address has been set up to share resources and information with all participants. The purpose of the Network will be to continue the discussions that germinated during the workshop and to support regional efforts on SCD. Most importantly, also to provide a platform for regional advocacy for their concerns globally to influence policymakers. ii) Establish an online platform to update and share resources • Protocols: Practices with regards to SCD management are myriad. In South Asia there is a serious need to consolidate toolkits and research materials to coordinate protocols for diagnosis, newborn screening, pediatric care, hydroxyurea prescription, pain management, long term follow -up and data collection. • Patient Care: To develop strategies for reducing out of pocket expenditure for patients. Best practices for psycho-social support and genetic counselling should also be shared in addition to protocols on transition from child to adult care. • Education &Awareness: Education materials for both clinicians and patients should be shared at a regional level. Materials catering to young men and women (delayed puberty, fertility and pregnancy) and supporting children in education are also lacking. Integration of SCD awareness into school curricula was recommended by many community-led organizations. Protocols and trainings for a balanced approach to counselling is required, which encompasses aspects of ethics, avoiding stigma, and highlights ways of supporting patient choice. iii) Coordinate research interests across different sites in the South Asia region • Hospital-based facilities indicated an interest to share open source data collection tools and protocols to coordinate common data collection across the region. Many gaps in the literature were discussed and it was highlighted that further research is required concerning the variation of morbidity and mortality of SCD in South Asia; new born screening and pediatric follow-up; effectiveness of low dose hydroxyurea; and management of co-h |
| Start Year | 2019 |
| Description | Narrating Blood: An international Research Network (CORTH, Sussex 25-29th June 2018) |
| Organisation | University of Sussex |
| Department | School of Global Studies Sussex |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | As an external member of CORTH, I was invited to take part in an international workshop involving a group of 15 academics and researchers across disciplinary backgrounds (anthropology, public health, education, Immunology, health advocay) interested in developing a larger programme of work on representations, materialities and politics of blood and blood disorders. My contribution focused on drawing conceptual links between the potential key ideas arising from our current ESRC work on inherited blood disorders and the work of the other network members. Apart from the sickle cell and thalassaemia community organisations that we have been working with in India for the current ESRC project, I have now developed collaborative links with several sickle cell and thalassaemia organisations in Nepal (e.g. Sickle Cell Society Nepal and Ministry of Health, Sri Lanka). I am going to Nepal in the last week of February to develop a future research proposal jointly, as part of the Mapping Anemia application being put together by CORTH partners, to be submitted to the forthcoming UKRI GCRF Health and Context Call 2019. Significant conceptual and methodological contribution to developing and writing the grant application submitted to the ESRC, being assessed by the panel in March 2021. |
| Collaborator Contribution | CORTH, CIRCY and IDS secured University of Sussex funding for the international networking grant to set up the network and organise the workshop in Sussex. This allowed a range of institutional and disciplinary backgrounds to be represented at the workshop (across the UK, India, Cape Town and Dhaka). The first report will form the basis of the continued discussions for developing focused research proposals in the near future whilst building a sustained working relationship within and across smaller groups of partners. Maya Unnithan, Director, CORTH and is leading on the overall application and co-ordinating with clinical partners within genetics at Sussex and across India and Bangladesh |
| Impact | Network Report - University of Sussex in December 2018. Following on from our discussions last Summer, the Blood Narratives Network is now writing a collaborative grant application on Mapping Anemias to be submitted to the preliminary round of the UKRI GCRF Health and Context Call 2019 (4th April 2019). The research proposal will focus on anemia among younger and older mothers and infants across different national and policy contexts (India, Bangladesh. Nepal, Ghana). It will cover environmental (nutritional) and genetic (thallasaemia, sickle cell) aspects of anemia and show how anemia speaks to both NCDs (above) and CDs (such as malaria. TB). It will take a specific approach to context (a cultural approach) across family, clinical and policy domains. The findings and outcomes will be used to inform health policy and practices on prevention of anemias under discussion, while focusing critically on the binary between the NCD/CD category and the mapping of models of prevention taken form infectious diseases onto genetic and environmental disorders in the low and middle income countries. The multi-disciplinary network and each project will represent different disciplines - ranging from anthropology, education, psychology, public health, microbiology, paediatrics, epigenetics and clinical medicine. Each team will work closely with with state and non-state organisations working with communities to design to design and implement the research, using a comparative method to analyse the import of context within and across national boundaries. |
| Start Year | 2018 |
| Description | VITAL CIRCULATIONS - WHITEROSE COLLABORATIVE NETWORK |
| Organisation | University of Leeds |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | SC is a co-applicant on the grant application, has contributed signifantly to the The WhiteRose Colllaborative seminars, workshops and further developed a sussessful PhD studentship (lead Supervisor, Leeds) in collaboration with Thacray medical Museum (blood and othering) due to start in Sept 2022. This collaborative is developing larger grant applications on the subject of vital circulations. |
| Collaborator Contribution | The partnership was initiated by two of ealry career researhcers (Leeds and Sheffield), who approached several potential research collaborators from diverse academic and non-academic backgrounds. This has resulted in avibrant network connecting the academy, voluntary sector and museums, and artists thinking and engaging with the ideas of decolonising knowledge and public engagment with science (WhiteRose network of PhD and post-doctoal students). |
| Impact | Anthropology, Science and Technology Studies, medical sciology, architecture, Hisotry, museum studies, critical race studies |
| Start Year | 2019 |
| Description | VITAL CIRCULATIONS - WHITEROSE COLLABORATIVE NETWORK |
| Organisation | University of Sheffield |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | SC is a co-applicant on the grant application, has contributed signifantly to the The WhiteRose Colllaborative seminars, workshops and further developed a sussessful PhD studentship (lead Supervisor, Leeds) in collaboration with Thacray medical Museum (blood and othering) due to start in Sept 2022. This collaborative is developing larger grant applications on the subject of vital circulations. |
| Collaborator Contribution | The partnership was initiated by two of ealry career researhcers (Leeds and Sheffield), who approached several potential research collaborators from diverse academic and non-academic backgrounds. This has resulted in avibrant network connecting the academy, voluntary sector and museums, and artists thinking and engaging with the ideas of decolonising knowledge and public engagment with science (WhiteRose network of PhD and post-doctoal students). |
| Impact | Anthropology, Science and Technology Studies, medical sciology, architecture, Hisotry, museum studies, critical race studies |
| Start Year | 2019 |
| Description | 3rd Global Congress on Sickle Cell Disease, Bhubaneswar, India |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This is the largest international conference on sickle cell (and inherited blood) disorders organised by the Global Sickle Cell Disease Network, hosted in Orrisa, India, this year. Apart from the scientific sessions on epidemiology, diagnosis and treatments from different parts of the world, including India and parts of Africa, the sessions also brought together a number of small and not so small NGOs working in the field of inherited blood disorders. As part of the fieldwork, I was shadowing Sickle Cell Society, India (Nagpur). They had to engage in prolonged negotiations with the organisers to allow them to take more than 50 young patients and carers, largely from the rural and poor areas of Maharashtra, who could not afford the delegate fee. Following protracted negotiations, the President succeeded in seeking part registration without the normal fee for these delegates. This was the only user contingent represented and they had an opportunity to interact with some of the leading clinicians who held small group sessions, as well as the policymakers and state Department of Health officials. The conference also provided an opportunity for these young people to travel outside their town/ village and meet other young people affected by sickle cell, and discuss the wider issues of acting as a unified pressure group to 'fight for their rights'. The conference also provided an opportunity for networking and I met up with a Yale student and local clinician from the Tharu region of Nepal, who are trying to set up a sickle cell service with the government of Nepal, and keen to learn from the work of NGOs in India. I have had a preliminary discussion with a view to facilitating a workshop of these different groups in India, towards the end of 2017, to facilitate exchange and capacity building. This will contribute to building long term working relationships for maximising impact on policy and practice, and exploring efficient models of state-NGO-market relationships across state and national borders. |
| Year(s) Of Engagement Activity | 2017 |
| Description | 8th May, World Thalassaemia Day Seminar, (invited presentation) Thallasemics India, Delhi |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Around 300 delegates (largely patients and their families and voluntary sector activists, policy makers and health care professionals) attended the seminar, 'The Basics of Thalassemia Management, Care and Prevention, organised by Thalassemics India', sponsored by The Ministry of Health and Family Welfare, Government of India. The first half of the Day involved discussions on treatment and management by leading clinicians; whilst the second half was devoted to policy related presentations. I was invited by the PAGTHALS (patient advocacy and support group within Thalassemics India) to talk about our research. My paper focused on preliminary findings related to the experiences of young adults regarding adolescence, education and employment vis a vi the new Disability rights Act and the lack of overall support and social care faced by young people affected by thalassaemia in our research. The Seminar provided a good networking opportunity to link with PAGTHALS (young adults with thalassaemia), with requests to contribute to their magazine and events in future, as well as some of the key policy makers within the Central and state government. These links will be important in organising the end of the project national seminar event to be held in Delhi, and sharing the recommendations based on the findings next year. |
| Year(s) Of Engagement Activity | 2018 |
| URL | http://www.thalassemicsindia.org |
| Description | Building Bridges: India-Nepal sickle cell NGOs' networking workshop |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | 54 participants from Nepal and different regions of India participated in this two day, capacity building workshop hosted jointly by UoY, GMC Hospital Nagpur, and Sickle Cell Nepal in Nagpur, representing several patient-support Groups, NGOs, patients, parents and healthcare practitioners. The workshop generated a sustained interest in building a network of sickle cell organisations across India and India and Nepal. The discussions focused on local regimes and practices of treatment and care, national policies and gaps in knowledge and practices of healthcare practitioners; followed by sharing of models of good practice that can be easily replicated in resource poor settings with minimal extra investment. A lot of interest was generated in developing and sharing local pools of clinical expertise and training , and developing a self sustained network of interested stakeholders beyond the life of the IBD/York project. A National Alliance of Sickle Cell organisations is already underway in collaboration with Novartis - under their Corporate Social Responsibility charter. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Community Focus Group Discussion, Gadchiroli, Maharashtra |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | With the help of our local NGO collaborator (Arogyadham) in Kurkheda, Gadchiroli district, Maharashtra, a focus group discussion was conducted by two members of the research team (SC and RS). The main objective of holding the group was to get a cross section of 10-12 participants from different religious and socio-economic backgrounds (caste- tribe) that may or may not have known someone with sickle cell or thalassaemia; to find out what they knew and/or thought about these disorders . However, instead 24 participants ranging from three head teachers of the local colleges, President and three members of the local Women's Welfare Association, a chemist, village council head (panchayat), a clinician, healthcare assistant , as well as parents, children and a couple of young adult patients attended the session. The discussion was moderated by SC ad RS in Hindi, with simultaneous translation into Marathi by a Research Assistant from the Sickle Cell Society India. We had provided a leaflet in Marathi explaining the research and the purpose of the focus group to be handed out to the participants in advance. This leaflet was first written in English, translated into Hindi by ISERDD and then into Marathi with the help of SCS India, to ensure the clarity of language and local context. The Arogyadham team members contacted potential participants by telephone and also sent a written invitation in Marathi along with the information leaflet. Contrary to our original plan, the presence of parents/carers as well as four children and adult patients meant that we had to divide the time so that we could discuss general issues of health within the community (keeping the four children entertained) before moving on to more specific issues that the carers and patients might have wanted to raise. We had to improvise the ground rules to moderate the animated discussion, especially since the Marathi speaking translator had a tendency to take over. Interestingly, the gender division is not marked in this part of Gadchiroli, though the women and men sat in separate rows. The caste divide was quite visible, with the upper caste men and 'respectable members' of the community sitting in the front row, and those from Adivasi and scheduled castes taking the back rows. An initial attempt at arranging the chairs in circular rows did not work since we had twice the number of people on the day. The Topics discussed were: i) Health in the community in general (women's health; men's health; children's health) ii) Knowledge about sickle cell and thalassaemia (cause, symptoms, iii) Treatment, prevention and issues of caring iv) The role of government and related agencies in improving care for patients and affected families There was a general consensus in the front row, that upper caste/ more educated and well off families are more secretive about sickle cell in the family. They often seek treatment in the private sector and you might get to know about such an illness only following death in a family. This was in reference to a recent death in the neighbourhood of a man in his 40s who had died of sickle cell. During the second half, the parents and adult patients raised several concerns related to lack of access to blood transfusion locally; access to education and employment. They also were keen to find out more about sickle cell and treatment etc. SC explained that we can only put them in touch with relevant organisations. Sampat Ramteke, President SCS India held a separate session with this group, once the refreshments were served and the focus group discussion had been concluded. |
| Year(s) Of Engagement Activity | 2017 |
| URL | https://www.york.ac.uk/healthsciences/research/public-health/projects/inherited-blood-disorders-indi... |
| Description | Delhi - IBDs - online dissemination event with parents and patients |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | This event was part of the dissemniation plan that had been put on hold due to the disruptions casued by COID-19. The meeting was held virually and despite lack of access to tablts and laptops, 13 of the 20 households joined in. Two parents borrowed a smart phone from a neighbour and were helped by their school going children. Due to work commitments and the timing, none of the fathers attended the evet. THe purpose was to share the main findings from te research and seek feedback, in light of the impact of COVID-19 on treatment, with a view to informing their healthcare practioners and addressing the gaps in emdical and social support for children and adults wih thalassaemia. mothers of younger children (going to a particular treatment centre) especially were quite vocal aobut the temporary failure of care when their treatment centre was designated as a COVID centre. The famileis shared experiences of having to navigate differnet hosptials for regualr transfusions and medical care. One of the mothers offered to set up a larger Whatap support group and act as a representative for taking up some of the long term care issues at another, larger commnuity event planned by the research team in Delhi, in April 2022. Hence, leadership and ownership of an informal group of poorer families in the sample who can ill afford to formally join one of the larger Thalassemia support groups. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Gadchiroli, end of project, community dissemination event |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | SC and Rajan Singh from ISERDD organised this half-day community event, at Kurkheda, aimed at taking the findings back to the research participants and discuss the recommendations that need to be taken forward and presented to the state health department. The Arogyadham field workers helped us in contacting the families and the key practitioners across Gadchiroli District hospital to the Kotkul village primary care centre. Given the distance, we provided transport to bring participants from both the ends of the district. 23 family members (parents, young patients, children) and 6 practitioners including the district NRHM sickle cell project co-ordinator, chief of the blood bank (District hospital) attended the event. An art and story writing competition was organised to keep the younger and older children busy. SC presented a summary of the main findings and recommendations and the participants contributed to the discussion. RK, President, Aryodham had a suggestion for the young people to form a regional Whatsap support group (an idea adopted from the Nagpur Workshop that he attended), to consolidate their presence and make their voice heard (state government). One of the boys spoke about why he was forced to drop out of school; and a young woman recommended that families, in particular parents, need to think more positively about sickle cell as being like other chronic conditions. SC will collate the recommendations and write a concise summary that can be circulated and presented to the state health authority. In addition, an attempt is being made to seek a University grant to fund and hold workshops for parents, patients and healthcare practitioners to design and disseminate a minimally safe toolkit, aimed at improving local practices that, our findings show, have serious implications for long term care. |
| Year(s) Of Engagement Activity | 2019 |
| Description | Improving care for patients with sickle cell : designing a guide for practitioners (Workshop, Gudalur) |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | One of the main findings from the larger ESRC grant showed that protocols embedded in government policy guidelines (2017) had little influence on practice of clinicians at a local level. Different hospitals and different clinicians within the same area might follow different treatment protocols that can be potentially harmful for patients in the long-term. Taking the cue from a colloquial Hindi term, Juggad, (improvising with little at hand), the team worked closely with clinicians, parents and patients and local research partners, to find practical solutions to improving knowledge and every-day practices of care, known to improve outcomes. With ASHWINI (Gudalur), we organised two consultative workshops (November 2019, April 2022), attended by invited delegates (in person/online) from across India and Nepal. Based on intense discussions, two toolkits for health care practitioners, parents/ carers and adult patients respectively, translated into 8 regional languages (including a version in Nepali) have been launched. Where relevant, audio and video recordings for family carers and brief videos highlight important information or skills patients and carers can use to improve long term outcomes of care. For instance, one of the videos teaches parents to palpate the spleen of a child so that they can mark a growth that is abnormal, and seek immediate help before it turns sinister. An online version of both the toolkits with links to extra resources is available online, and accessible free of charge to anyone in the world (ASHWINI website). http://ashwini.org/programs/sickle-cell-centre |
| Year(s) Of Engagement Activity | 2022 |
| URL | http://ashwini.org/programs/sickle-cell-centre |
| Description | Korchi Village Health awareness camp |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Public/other audiences |
| Results and Impact | SC was an invited by the local collaborating NGO, Arogyadham based in Kurkheda (Gadchiroli district) to speak at a mobile health check- up and information 'camp' (Rognidhan shivir), about the ESRC research project being carried out in the area. The event was organised organised in a remote village (Korchi) by the National Health Mission (NHM Mumbai), District Health Services Gadchiroli and Arogyadham. The Mobile Medical Unit team, with two nurses, technicians and a (Ayurvedic) doctor working closely with the local Sickle Cell Prevention and Management project (NHM), set up stalls where children were tested for anaemia and diabetes, and villagers (largely women) were seen by two local doctors one of whom is a gynaecologist based in Kurkheda (a small town). SC talked in Hindi (understood and spoken widely in the area) about the project and emerging issues of access to treatment and long term care; and the potential recommendations based on the research to be made to the District and state level health authorities. The Asha worker (responsible for antenatal and post-natal care in rural areas) among others, focused on screening and treatment of sickle cell in her speech. These events are successful in disseminating basic information about the condition, its transmission and the importance of screening in rural areas with poor access to public transport and health services, and how to access state welfare benefits. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Nagpur workshop on revised disability certification |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | I helped the Sickle Cell Society India (collaborating NGO in Maharashtra) in organising, and facilitated, a workshop to discuss the revised guidelines on disability certification circulated by the Government of India in January 2018. The revised Rights of Persons with Disability Act (Dec. 2017) incorporated sickle cell (and thalassemia and haemophilia within the expanded list of conditions covered by the Act. However, whilst previously a doctor or Civil Surgeon could simply issue a certificate of disability for a patient with SCD or thalassaemia, now a doctor has to assess the level of benchmark disability which, in turn, will determine whether and what level of state benefits related to the Act a patient might have. he compex process will have to be repeated each year since these conditions are (rightly) considered dynamic. However, the model of assessment is premised on physical disabilities and will be very difficult to judge in complex and multiple disabilities faced by these patients. in addition, in poorer, rural, areas, patients and NGOs often use such welfare markers to fight for basic issues of right to health and equity. The workshop focused on discussing the pros and cons of the guidelines and why everybody present seemed to believe that since SCD is a genetic - liifelong condition, expected only to worsen over time, access to healthcare and welfare should be provided to all rather than a select few. Future, in their perception is seen through an experiential lens, where little basic healthcare facilities lead to significant deterioration in health and early death. |
| Year(s) Of Engagement Activity | 2018 |
| Description | Nagpur, information session - Police Academy |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Public/other audiences |
| Results and Impact | Sickle Cell Society held an Information dissemination session for students, staff and employees of the Police Academy, Nagpur where over 800 (women) trainees attended after their evening physical education drill. The session involved |
| Year(s) Of Engagement Activity | 2018 |
| Description | Paris, presentation for ERC seminar on Genetics, Genomics and Global Health |
| Form Of Engagement Activity | A talk or presentation |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Professional Practitioners |
| Results and Impact | This international workshop was organised by the ERC GLOBGEN team, French National Centre for Scientific Research, Paris. The invited paper, "Recessive gene disorders and the making of birth defects preventable: an Indian case-study" was presented to a closed audience all of whom had a specialist interest in different aspects of global health history and governance, from across Europe, North and South America. The workshop sought to address the relative paucity of anthropological and historical work broaching genetics and genomics in the global South, compared to the scholarship available about Europe and North-America. The workshop brought together anthropologists, historians and sociologists working on genetics and genomics in different contexts, and led to a lively and focused debate on the invited pre-circulated papers. As a result of the discussions over two and a half days, the organisers are planning to bring out a special edition of essays on the interface between state, genetic/genomic technology on one hand and universality and particularity underpinning specific public health interventions on the other. |
| Year(s) Of Engagement Activity | 2017 |
| URL | http://globhealth.vjf.cnrs.fr/ |
| Description | Toolkit for Thalassemia Care for Patients and Family Carers 26th April 2022, Udaipur (Rajasthan, India) |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | A meeting was held at RNT Medical College Hospital, Udaipur, Chaired by the Principal- paediatrician - Dr L Poswal, with parents of children with thalassemia, and the health care providers. The discussion focussed on how to improve thalassemia treatment and care. Apart from key practitioners at the hospital,13 participants including parents of thalassemic children from Udaipur who had taken part in our research, attended along with SC, CP, RC (UoY, Prayas members). The objectives of the meeting were: • To discuss the challenges faced by thalassemia children and their parents in treatment and care especially as the children transition into adolescence and adulthood. • To identify areas in thalassemia treatment and care which require greater attention from the parents and the health care providers • To seek inputs for a potential thalassemia information tool-kit for parents and healthcare professionals. One of the outcomes was that the participants decided to form a local support group to follow up on the points raised at the meeting, with a view to using the Gudalur toolkit as a model of good practice . Another virtual meeting was held in the evementing to feedback the minutes of this meeting to the participants and clinicians from another local site - Chittuar, providing care to children and adults with thalassaemia. These two groups have now forged a formal link, facilitated by Prayas, our local collaborator.. |
| Year(s) Of Engagement Activity | 2022 |
| Description | UDAIPUR - IBD -SHARING FINDINGS WITH THE COMMNUITY |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Local |
| Primary Audience | Study participants or study members |
| Results and Impact | This was a hybrid face to face/ online event held at a community centre in Udaipur, attended by 49 participats including famileis affected by thalassemia not previosuly known to us. The CMO of the main treamtent Centre was a keen participant in the dicsussion. Meanwhile, the children were kept busy with a drawnig competition. Some of the parents shared their recent experiences during and since COVID -19, and the different ways in which care was affected. They made specific requests to the CMO for imoriving access to adolescent care, a separte adult ward and quicker acces to blood from the blood bank -given the frequency and recurrence of the transfusions over time for each patient. As a group, couple of parents took the lead in expanding their core group patient support network, making a sussgestion that a regional SCD community with the famileis across in Chu=irttaurgarh be formed. |
| Year(s) Of Engagement Activity | 2021 |
| Description | Udaipur - IBDs - Sharing the findings with the community |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | Regional |
| Primary Audience | Professional Practitioners |
| Results and Impact | The main purpose of this community event was to take the findings back to the families who had take part in our research in Chittaurgarh distrrict (Rajasthan) and seem their views on how to present the recommendations to the health practitioners and state health authorities. Some of the key healthcare practitioners, paediatrician, and the regional lead for the National Health Mission overseeing the thalassemia and sicklecell programme in the area also attended the event, while SC and KA joined via zoom from York. More tan 50 participants were involved and the patients and parents presented their views and suggestions for improving the care to the practitioners. Despite free access to blood and treamtment across Rajasthan, there were generic gaps in accees to appropriate long-term advice regarding co-morbidities and transitioning to adult care for a majority of the participants. The summary of findings led to an animated discussion and representaitons from the participants who directly cornered the healthcare practioners for answers. Education, employment, disability and related issues were high on the agenda and they made recommendation for improvements taking ownership of the research and how best to use it. The meeting concluded with a gneeral call for setting up a regional thalassmeia support group, using Whapap as a means of communication, in the first instance. |
| Year(s) Of Engagement Activity | 2021 |