Inclusion of disability to improve healthcare innovation in South Africa
Date: 19 May 2016
Time: 20:30 – 21:30 SAST (14:30 EST)
Moderator: Vanessa Carter
Steve Jobs concept of the user-experience and its relation to innovation
Steve Jobs vision of “making a dent in the universe,” and his intense commitment to positioning Apple at the forefront of ICT lead to many breakthrough innovations. He mastered the art of turning adversity into opportunity. He was a leader “driven-by-purpose” and a visionary in terms of how it could be applied to improve design and usability, he was exceptional at building ideas from the collective human experience.
The impact of excluding disability in South Africa’s economy
Thanks to technology, we all live in a “global village.” Today, the Internet and social media are often seen as a combined medium that most closely joins people throughout the globe, allowing anyone with an Internet connection to communicate with individuals and groups of people in far away places.
With technology’s constantly changing and progressing companies need to be flexible and adjust their mindsets so they’re more inclusive if they want to remain globally competitive. Addressing their belief systems about disability is a good place to start.
Society tends to view people with disabilities as a single group. Thus, people in wheelchairs have become the popular representation of people with disabilities. This ignores the diversity of disability and the variety of people’s specific needs or their different types of disability. Some disabilities like mental health conditions or rare disease, haven’t been clearly defined or in many cases properly reported, which questions the accuracy of our statistics.
I myself haven’t declared either of my disabilities which include facial disfigurement and visual impairment because I’m not clear on my rights I have, however. declared the disability of my seven year old son who has an Autism Spectrum Disorder, which is more clearly defined.
It is critical to note that disability does not only affect disabled individuals, but their family and immediate communities too. Key forms of exclusion responsible for the cumulative disadvantage of people with disabilities are poverty, unemployment and social isolation. According to an ENCA report, an estimated 68% of disabled people never seek employment. The prevalent philosophy was that disabled people were not to be hated or feared, but rather to be pitied, or helped as part of the ‘deserving poor.’ These social attitudes resulted from the perception of disability as a health and welfare issue and have invaded all areas of our society.
According to a 2014 report by Statistics South Africa, 7.5% of the country’s population experiences some sort of disability. That translates into a documented 2.8 million people. The question of how these individuals could be empowered still remains.
Read more about an integrated South African economy in the government’s Integrated National Disability Strategy.
What is social innovation and how can it improve our public health?
A social innovation is a novel solution to a social problem that is more effective, efficient, sustainable than current solutions. The idea behind social entrepreneurship is that fresh ideas will bring about productivity in the “social sector”. (Eg. Public services and charity). This can be done in numerous ways which include crowdsourcing public ideas through websites, social media, marketing campaigns or hackathons. The key to effective problem-solving for social change is diversity and inclusion.
How can understanding the human experience improve our ability to innovate?
By including the people who have experienced the issues, we are more likely to identify barriers which need to be addressed. In the case of health care, the human experience is called the patient experience. A good example is a friend of mine, Leonard Ngobeni. (Read his story here)
Leo is a local voice for the disabled youth and has a rare disease which has him wheelchair bound. He grew up in a rural area in Winterveldt and then moved onto a township called Soshanguve. During his teen years he was recognized for his astounding talents as an artist. He was awarded a bursary at The Johannesburg University to study multimedia design, but later moved onto UX design (User Experience Design), because of its focus on problem-solving with design thinking. Today Leo is employed by a leading international design agency in Johannesburg. Through all of his achievement, he has had to deal with routine hospital visits and a primitive transport system which didn’t provide any disability support. Leo proved that given the right opportunities it is possible to contribute equally. He has an idea he is working on to design a mobile app to empower others in the rural area that face similar issues.
Because of this experience, his ability to design a solution would be unique as opposed to an IT developer who approached the same issue with an outside perspective. The solution could help improve social issues on a practical level.
Understanding the human experience in digital design is vital to collecting accurate data. It’s vital for research into disease and for discovering new medical treatments in the era of precision and personalized medicine. Patient input provides the foundation, as Steve Jobs suggested, to build the ideas around. Patient stories can help to drive innovation in the right direction. By utilizing my own patient experience in South African healthcare, I’m promoting awareness for eHealth through the use of web 2.0 and other technologies. One technology for example is mobile video consulting, because a Skype consultation from a face transplant surgeon in the United States offering advice enabled me to complete my face reconstruction in eight months after ten years of struggling to find local specialists online. (My ePatient story)
Diversity and inclusion requires a major shift in terms of role playing and takes on an interdisciplinary approach
Changing the way we live, perceive others or do business requires imagination and creativity. Interdisciplinary health innovation requires ongoing learning and an open mind with a willingness to see the world in new ways so that we can create access where there is none. The key to economic change is respecting our differences and listening to our stories so that we learn from each other and move forward. Stanford University’s Medicine X have named this revolutionary approach “Everyone Included (TM)”.
Healthcare in South Africa is starting to recognize this paradigm shift through an emergence of local events, but for the most part, one fundamental participant’s voice is still being undervalued – The patient.
James Partridge OBE, DSc (Hon), FDSRCSEd (Hon)
Founder and Chief Executive, Changing Faces
ref: Business Disability Forum (UK):
James Partridge is Founder and Chief Executive of Changing Faces, the leading UK charity supporting and representing people with disfigurements, which is now a £1.5 million organisation with a 40-strong staff team. Before setting up Changing Faces in 1992, James worked as a health economist in public health in the NHS in the ‘70s, and established a dairy farming business and taught A level economics in Guernsey in the 1980s.
James launched Changing Faces after the positive response to his book, published by Penguin (1990), ‘Changing Faces: the Challenge of Facial Disfigurement’ (available from Changing Faces). He writes and presents widely on disfigurement, disability, inclusion and social entrepreneurship in the UK and internationally. In November 2009, for example, James was a guest newsreader for a week on national TV (Channel Five News), an appearance designed to foster acceptance and inclusion of people with disfigurements in society.
James has won a number of national awards such as in March 2010, the Third Sector award for Most Admired Charity Chief Executive 2010 following his nomination by Dame Mary Marsh, Director of the Clore Social Leadership Programme. He also won The Beacon Prize for Leadership in 2010, and Lifetime Achievement Awards from the Directory of Social Change, the National Diversity Awards and the Business Disability Forum.
James Partridge is a long-time Associate of Business Disability Forum and holds various honorary posts such as on Ambitious about Autism’s Development and Public Affairs Committee. He previously served on the Appraisal Committee of the National Institute for Clinical Excellence (NICE), the Chief Medical Officer’s Expert Panel on Cosmetic Surgery, and as Chair of the Department for Work and Pensions’ Employer Engagement Steering Group and is also a founding Director of Dining with a Difference, a disability consultancy company ().
Married with three ‘grown-up’ children, he lives in Guernsey and London. He was appointed an Honorary Fellow of the Royal College of Surgeons of Edinburgh in 2005 and has Honorary Doctorates from both of the Universities in Bristol, his birthplace.
Professor Steve Reid
Glaxo-Wellcome Chair of Primary Health Care, University of Cape Town
Professor Steve Reid is a Family Physician with extensive experience in clinical practice, education and research in the field of rural health in South Africa. As a conscientious objector to military service in the 1980’s at Bethesda Hospital in north-eastern KwaZulu-Natal, he was involved in community initiatives in health in the Bethesda health ward, and completed his Masters thesis in Family Medicine on the topic “The Community Involvement of Rural Clinic Nurses”. Moving back to Durban after almost 10 years, he established a Vocational Training Programme for rural doctors at McCord Hospital. He then took up the position of director of a research unit called the Centre for Health and Social Studies (CHESS) at the University of Natal, and with his team, pursued a number of training and operational research projects in rural districts around KwaZulu-Natal, focused on the strengthening of the district health system.
In 2001 the Centre was re-named the Centre for Rural Health, and Steve was appointed Associate Professor in the University of KwaZulu-Natal, with responsibility for community-based education and rural health. He teaches undergraduate and postgraduate students in public health, family medicine and health promotion, around the theme of Community-Oriented Primary Care (COPC). He has published extensively on the issue of compulsory community service, and is currently involved in numerous research projects in the field of rural health, including medical education, human resources for health, and HIV and AIDS.
Professor Reid and the University of Cape Town have recently launched a free online course worth attending, called Medicine and the Arts: Humanising Healthcare.
Start answers with T1, T2 or T3 for transcript.
T1: How can the disabled community or patients contribute towards public health and eHealth innovation? (eg. mobile apps, social entrepreneurship, advocacy, etc.)
T2: What can society do to become more supportive of diversity and inclusion? (eg. media, advocacy, education, adjusting CSI programs, adjusting employment programs, etc.)
T3: What types of conditions do you regard as a disability and how do you feel it could be used in terms of improving health? (eg. Autism, depression, AIDS, sustainability because it is purpose-driven, etc.)
CT: What closing thoughts do you want to share?
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