Excerpt from published article: Sickle cell in the university curriculum: a survey assessing demand for open-access educational materials in a constructed community of interest.
Rolfe V, Fowler M and Dyson SM. (2011). Diversity in Health and Care, (8)4: 239-249. Available: http://www.ingentaconnect.com/content/rmp/dhc/2011/00000008/00000004/art00006
Why support sickle cell disease with OER?
Sickle cell is now the most common single gene condition in England, where 1 in every 2,300 births is a child with sickle cell disease. It is a leading genetic condition globally with 400,000 children with sickle cell disease born every year (Dennis-Antwi et al, 2008), mainly in sub-Saharan Africa (Modell and Darlison, 2008). Most children died before 5 years (Fleming, 1989), and with screening programmes about to be implemented in a number of African countries (Kafando et al, 2009; Rahimy et al, 2009; Tshilo et al, 2009), and a 95% survival rate reported in pilot programmes for such interventions (Dennis-Antwi et al, 2008), sickle cell is set to become a leading issue.
Sickle cell is notable for its relevance to all the STEM subjects. In genetics for example, it provides and excellent exemplar of the complexities of inheritance (Griffiths et al, 2002). There are several different outcomes in terms of structure and function of the organism associated with the sickle cell gene, and they are not all inherited in the same way. The gene associated with sickle cell is associated with a range of phenotypic features. These include (1) extent of resistance to malaria; (2) the alteration of electric charge of the beta-globin molecule that means it moves at different rates when placed in gel and an electric current run across; (3) the tendency of red blood cells to sickle (take on the characteristic sickle cell shape) and (4) the presence of anaemia (Griffiths et al, 2002).
Sickle cell disease is also remarkable for affecting almost every system in the body: strokes, silent strokes, retinopathy, acute chest syndrome, aplastic crisis, splenic sequestration, necrosis of joints, damage to kidneys, priapism and recurrent leg ulcers (Serjeant and Serjeant, 2001), and could thus be used as a starting point for consideration of many aspects of anatomy and physiology. Indeed there is an ongoing debate about the possible role of sickle cell trait in exercise physiology and sudden death in athletes (Le Gallais et al, 2007; Connes et al, 2007; Dyson and Boswell, 2009)
Sickle cell in university curricula
Sickle cell has been a neglected part of the curricula of medicine, nursing and midwifery, and has attracted accusations that sickle cell has been marginalized in the development of health services because it has been constructed as an ethnic issue rather than a health issue. There is an ongoing need for resources to support student-centred learning in these university subjects leading to health services employment.
Sickle cell has yet to feature strongly within either social sciences or the humanities, but there is much potential to work through the example of sickle cell in these subjects too. In the social sciences, there is a small but growing body of work in the sociologies of ethnicity (Dyson, 2005), health, education, crime and science. Sickle cell has been studied within psychology for stigma, quality-of-life and risk of depression scales and for the utility of cognitive behavioural approaches. In social policy and social work it has featured in the issue of black carers (Ahmad, 2000).
Aim of this study
The purpose of the sickle cell open resources initiative would be to create a resource that would promote sickle cell as a distinctive subject, of likely growing interest and concern globally in the future, and do so for the benefit of all the STEM subject. This is likely to have benefits for future employers; encourage symbiosis of ideas within the STEM subjects and open up productive channels for the cross-fertilization of ideas between STEM subjects, arts and humanities subjects and social sciences.
The aim of this research was to evaluate the concept of a sickle cell open educational resource with stakeholders, in order to shape the development of the project.
A global database of 1500 individuals with an interest in sickle cell was constructed. This included health professionals involved with sickle cell; academics who had published on sickle cell or thalassaemia; non-governmental organizations on sickle cell; and people living with sickle cell disease known to the authors. This group of people were emailed using blind carbon copy so as not to reveal a list of addresses to those contacted.
The recipients of the email were asked to consider completing a short survey at the on-line survey facility SurveyMonkey.com. The survey consisted of open-ended questions or those based on a 5-point Likert Scale.
A total of 226 responses were achieved. 41% of respondents were UK based (n=93), and 59% from elsewhere (n=133), including North and South America and the others from Africa, Europe, Middle-East and Asia Pacific.
The majority of respondents were health professionals (57%, n=129), with university lectures the next largest group, and a range of others including society members, social workers, patients and family members.
Awareness of Open Educational Resources (OERs) and Repositories
In response to the question “have you heard of the term “open educational resources” (OER), 42% had. The awareness of OERs was pretty even with 44% in the UK and 40% elsewhere having heard of the term. Of the different role categories, not surprisingly more university lecturers had heard of the term OERs compared to health professionals (62% versus 38% respectively). The respondents who were patients, teachers or from voluntary groups had not heard of OERs.
The volunteers were asked to indicate whether they had heard of any global repositories that contain OERs. 35% (n=80) had not heard of any of the repositories and sources of OERs indicated. Of the remaining, 146 respondents had heard of one source or more with YouTube Edu and iTunes U were the most familiar, with the UK Open Universities Open Learn reasonably well heard of. The Open Courseware Consortium from the Massachusetts’s Institute of Technology which facilitates open sharing in the US, and the UK’s Jorum.ac.uk were less well known.
Interest in OERs on Sickle Cell Disease
When questioned, 88% of respondents (n=199) suggested they would be interested / very interested in freely available resources on Sickle Cell Disease, with a wide interest in these resources by not just academic institutions but health care professions and members of the public.
A wide range of resource types looked to be of equally interest including research data and publications, video, animation and audio, lecture slides with audio and stimulus questions. Images, diagrams and photographs were also equally popular.
Again, the subject matter of interest was equally diverse, with medicine the most popular (76% of total responses), and also an indication of the importance of genetics (61%). Other cross-curricula material including social sciences, humanities and arts also attracted a level of interest.
“It would be good to have materials suitable for both medical education, as well as for patients and families”. A Sickle Cell Voluntary Organization, USA.
“I believe there is a need for such resources for healthcare professionals, patients and families”. University Lecturer, USA
“This would be an excellent resource because so many educational programs do not contain info on SCD”. University Lecturer, USA
Comment July 2013
There was a good level of interest in the notion of sickle cell open educational resources from a wide range of parties, including academics, healthcare professionals and charities. A wide range of subjects were reported to be of potential interest. The outcomes of this research helped shape the development of our “Sickle Cell Open” project. The website is located as follows (http://www.sicklecellanaemia.org). Subjects covered include science, genetics, nursing, social sciences, law and arts.
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Point:Counterpoint: Sickle cell trait should/should not be considered asymptomatic and as a benign condition during physical activity Journal of Applied Physiology 103: 2137-2138.
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Tshilo, L; Aissi, LM; Lukusa, D; Kinsiama, C; Wembonyama, S; Gulbis, B; and Vertongen, F (2009) Neonatal screening for sickle cell anaemia in the Democratic Republic of the Congo: experience from a pioneer project on 31, 204 newborns Journal of Clinical Patholology 62: 35-38.