Publication – Sickle cell in the university curriculum

Publication Excerpt

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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:

 Publication Excerpt

 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 The survey consisted of open-ended questions or those based on a 5-point Likert Scale.


Respondent Details

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 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 ( Subjects covered include science, genetics, nursing, social sciences, law and arts.


Ahmad, W. I.U (2000). (Ed) Ethnicity, Disability and Chronic Illness. Buckingham. Open University Press.

Connes, P., Hardy-Dessources, M. and Hue, O. (2007) Counterpoint: Sickle cell trait should not be considered asymptomatic and as a benign condition during physical activity Journal of Applied Physiology 103: 2138-2140.

Dennis-Antwi, JA; Dyson, SM and Ohene-Frempong, K (2008) Healthcare provision for sickle cell disease in Ghana: challenges for the African context Diversity in Health and Social Care 5 (4): 241-254

Dyson, SM (2005) Ethnicity and Screening for Sickle Cell and Thalassaemia Oxford: Elsevier Churchill Livingstone.

Dyson, SM and Boswell, GR (2009) Sickle Cell and Deaths in Custody London: Whiting and Birch.

Fleming AF. (1989) The presentation, management and prevention of crisis in sickle cell disease in Africa Blood Reviews 3: 18-28.

Friend, F and Swan, A (2010) Publishing research papers: Which policy will deliver best value for your university? Available: [accessed 18th June 2010]

Griffiths, AJF; Gelbart, WM; Lewontin, R and Miller, JH (2002) Modern Genetic Analysis: Integrating genes and genomes New York: WH Freeman and Company.

Houghton, J, Rasmussen , B, Sheehan, P, Oppenheim, C, Morris, A, Creaser, C, Greenwood, H , Summers, M and Gourlay, A (2009) Economic Implications of Alternative Scholarly Publishing Models: Exploring the costs and benefits London: JISC Available: [accessed 18th June 2010]

Kafando, E; Nacoulma, E; Ouattara, Y; Ayéroué, J; Cotton, F; Sawadogo, M and Gulbis, B (2009) Neonatal haemoglobinopathy screening in Burkina Faso Journal of Clinical Patholology 62: 39-41.

Le Gallais, D., Lonsdorfer,J.,   Bogui, P., and Fattoum, S. (2007)

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.

Modell, B and Darlison, M (2008) Global epidemiology of haemoglobin disorders and derived service indicators Bulletin of the World Health Organization 86 (6): 417-496.

Rahimy, MC; Gangbo, A; Ahouignan, G and Alihonou, E (2009) Newborn screening for sickle cell disease in the Republic of Benin Journal of Clinical Patholology 62: 46-48.

Serjeant, G. R and Serjeant, B. E. (2001) Sickle cell disease. Oxford University Press, Oxford.

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.

Research outputs 2011

As our open education activities and research continue to build momentum, staff at De Montfort University are keen to disseminate their findings as widely as possible.

2011 was no exception and a busy year with 3 full research papers accepted for publication and a number of articles presented at national conferences. At the HEA Bioscience Conference in June 2011, Viv presented research into the search engine optimisation (SEO) approaches used on the SCOOTER website. These are on-line marketing techniques used for commercial practices to boost product awareness and sales, but all the principles apply to boosting awareness of university resources – it is just that we are not looking for commercial gain!

The abstract can be found on the SCOOTER website :

Rolfe V (2011). Raising the profile of Bioscience Open Educational Resources (OERs) on the Web. Proceedings of the Effective Learning in the Biosciences Conference. June 30 – July 1 2011, Edinburgh UK.

Available at:

In a second piece of research, Viv and Douglas Gray completed a systematic review to ask the question whether multimedia resources – video, animation, podcasts etc, are really effective educational tools. We know that students love using on-line video but do they really help students learn? The resources reviewed here were not open education resources with many of the papers found pre-2000 so before the term “open education” originated. However the findings are directly relevant.

The abstract can be found on the SCOOTER website:
Rolfe V and Gray D(2011). Are multimedia resources effective in Bioscience education? Proceedings of the Effective Learning in the Biosciences Conference. June 30 – July 1 2011, Edinburgh UK.

Available at:

As 2011 closes, 2012 promises to be a busy year with papers submitted to the OER12 conference in Cambridge, and further funding gained by Viv Rolfe and Mark Fowler to look at university policy for promoting and supporting education.

All our publications on open education and our other subjects of interest can be found on the De Montfort research archive DORA:


End of project report

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End of project report

Here is the end of project report from 24th October 2011 archived as it is no longer available on the HEA website sadly. I’m updating this in November 2017, and now some years after the end of the project it is nice to see this SCOOTER website and resources on YouTube still being used. Professor Dyson continues his brilliant work, and more of his resources, particularly the guides for schools, are translated into several languages for global use.

Anyhow – here is the project report and main recommendations made at the time.

PDF File – SCOOTER Final Report

General Recommendations

Sharing educational resources around a subject theme such as haemoglobin disorders is important and has generated much interest and collaboration, but allowing such activity to become a self-sustaining initiative is a longer-term goal.

On-line and off-line marketing techniques are equally important – the use of social networks such as Twitter, Facebook, Posterous and YouTube, as well as conventional off-line networking,

Cultural transformation doesn’t just require staff engagement and having a policy in place. Institutions need to look at incentives and staff motivation, not just to be involved in OER but other scholarly activities as universities face the future. Creative solutions need to be provided to provide staff with time; these could include spontaneous events such a reading weeks where an output has to be demonstrated; this could include a more creative approach to timetabling to keep space clear; for our institution the use of wider technology solutions for example on-line assessment would also reduce the burden of more traditional academic practices.

OER is a useful vehicle for academic staff to explore copyright, and a clear conclusion, is that academics wishing to not just produce but also use OER, they need to have access to relevant expertise for consultation. Determining the Creative Commons licence of a resource is not enough, and the authenticity of each and every author also needs to be verified. Layers of copyright within a single resource can also be complex and time consuming to understand.

Recommendations for the Wider Community

Institutions considering introducing OER policy and transforming practice should refer to OOER Institutional Policy Toolkit as a starting point, and learn from other organisations which approaches worked or did not work. Transformation takes time and requires engagement from staff at all levels.

Hospitals, community organisations, industry should consider OER as a vehicle for networking with academic institutions, and possibly don’t appreciate the relevance or usefulness of assets that they own. From these practices, dialogue about research, collaboration, employability can all follow.