My IYIL2019

Life Languages

Globally there are estimated to be 350 Million people living with rare diseases , which is similar to the number of people that speak Indigenous Languages (370 Million). There are 6 -8000 rare diseases which is similar to the number of Indigenous Languages (7 Thousand). Languages are the critical component to transforming health and well-being for hundreds of millions of people.  Life Languages is to retain and empower Indigenous languages and partner this to enable new technologies to equitably transform health and well-being, and to create connected communities.

There are up to 1 in 12 people living with a rare disease in Western Australia (WA), 70% of these are children and the number of children living with rare diseases in just the very small population of WA alone is estimated to be 63,000.

People with rare diseases frequently suffer from inequitable access to diagnosis and treatment. The inequities in Aboriginal, and broader Indigenous, health are also undeniable, and they are at risk of increasing with advances in biomedical innovation. However, because the application of some technologies  directly  in standard medical care, like whole genome sequencing and 3D facial analysis, are so new, there is a unique opportunity for Ingdigenous people to benefit with at least the same rate as non-Indigenous people . Also and uniquely, these new technologies provide a tractable and scalable opportunity for health transformation. Opportunities that are founded in language.

From birth we communicate with each other through language. This includes written languages; oral languages; and our body language, such as our facial expressions. The precise and culturally safe use of language is critical to improving both Aboriginal Health, and the lives of individuals living with rare diseases. Many rare diseases are genetic, and collectively Aboriginal Australians and other Indigenous peoples are equally as likely to have a genetic condition as the wider population.

Remarkably, in WA, solutions generated by serving the need of Aboriginal children living with rare genetic diseases have been transformative for our childrens’ health.   That is for both Aboriginal and Non-Aboriginal children. These innovations include:

  1. The Rare and Undiagnosed Diseases Diagnostic Service. This tripled diagnostic rate for complex chronic undiagnosed diseases in state-wide service (10 to 30%, Finalist WA Health Award 2016). It was initiated with serving the unmet need of an Aboriginal family in remote WA;
  2. The Undiagnosed Diseases Program (UDP). The UDP was established to solve our medical mysteries for the most intensive users of the Health system that remained undiagnosed despite the fantastic efforts of multiple specialists. The UDP delivers a world-leading diagnostic rate of 55% (Nominated WA Health Equity Award, 2018). 1 in 4 children seen through the UDP are Aboriginal. This is not because genetic conditions affect Aboriginal children more frequently than non-Aboriginal children. It is because of the particularly complex pathway that Aboriginal children have to navigate to achieve a diagnosis; this means they are overrepresented in the UDP. It is also due to attention to cultural safety by the UDP team. Also, a number of digital health innovations, including those now employed internationally[4-6], have been developed by serving these children;
  3. 3D Facial analysis for the Health of Western Australian Aboriginal Children which delivered the Cliniface suite of facial analysis tools cliniface.org that are now used in state-wide care for Aboriginal and non-Aboriginal children and youth.

That is to say that serving needs in Aboriginal health has delivered solutions that close the gap, and go past the gap. This has delivered solutions for our Aboriginal and non-Aboriginal WA community, and beyond. It has created solutions for all of us .

Accurate and culturally safe language is critical to all forms of medical care and health innovation.  This is reflected in the WA Health, Aboriginal Health and Wellbeing Framework  where it’s stated that ‘the preservation, promotion and strengthening of culture, cultural practices and language , through the delivery of health care and services, will enhance the protective factors of culture (WA DoH 2015).  Importantly, Indigenous language use is associated with improved health and wellbeing of Indigenous people (Biddle and Swee 2012; Whalen et al 2018) and an article in the Lancet earlier this year observed that “the implementation of linguistically sensitive health care… can help revitalise indigenous languages” (Flood, Rohloff 2018).

Recognition of Aboriginal language in the medical context also helps to acknowledge Indigenous Knowledge Systems; these Knowledge Systems contain profound scientific knowledge (by way of example a recent examination of oral traditions by an Australian astronomer found that Aboriginal discovery of variation in star size likely predated European discovery – Hamacher, D.W., 2018) Investigation into these systems may also provide insight into the types of medical conditions and diseases that existed amongst the pre-colonisation Aboriginal population.

The Languages that will be used to transform health through this proposal are:

  1. Genotype: Our genetic language . Our genotype is spelt in the four life letters of our DNA (A,C,T and G). This language differs around the globe. This language needs to be understood locally and globally to deliver equitable genomic health care, such as for early and accurate diagnosis. We have clinically translated and implemented the first stage of the world’s first Aboriginal genetic reference range (language) to improve clinical diagnosis in our public health system. We now need to develop the appropriate oral language to better communicate with the Aboriginal community for (genomic) health care, to accurately interpret genomic testing; and to learn together with the Aboriginal community for the health of all of us.
  1. Phenotype: the language of health and disease. Documenting a patient’s story’ examining them and performing tests, is the daily work of medical professionals. In medicine these combined elements are called a patient’s phenotype. Medical professionals describe this in their own medical language. Patients and families use their own languages.

Medical professionals make decisions based on the phenotype. Describing a phenotype is called phenotyping. Medical professionals use the phenotype to decide what the diagnosis is and how to treat the condition. They also use the phenotype to assess if treatment is working.

  A simple common example:

  • Cough and fever and green sputum + hearing unusual noises with a stethoscope +x-ray changes = a phenotype = pneumomia
  • Treatment = antibiotic A
  • Persisting cough and fever and green sputum + antibiotic A = a phenotype = antibiotic resistant pneumonia
  • Treatment option= antibiotic B
  • No cough and fever = a phenotype = well

Phenotyping in (rare) diseases is essential for every part of patient care.  Also, researchers use the phenotype when they are e.g. developing new medicines; and regulators require the phenotype e.g. for post-marketing surveillance of new drugs.

Phenotyping is both the entry, and the re-entry point for medical care. Capturing the phenotype in a rich and precise manner is fundamental to empowering patient care.

Patients and their families are living with their conditions and they are the direct source of the information about their phenotype. They have the lived experience and the unique expertise of their disorder. So, capturing this information directly from patients, and empowering their stories by translating them into a format that computers can understand, creates a unique opportunity to transform health care. To this end, as part of an international consortium we have created a way to deliver the basis of a translator [5]. This translator unites patient’s lay language (the voice of the patient), doctor’s medical terminology (the voice of medical professionals), and computer coding (the power of computers) to create a medical trinity for precise diagnosis and personalised care. The foundation of this translation is a fundamental biological language called the Human Phenotype Ontology (HPO). In a way you could think of it being a base language, like Latin, which underpins many other languages. Currently, the translation extends to English, Mandarin and other languages. However, it does not extend to Aboriginal languages.

Life Languages will serve an area of high unmet by building momentum to empower a universal translator.

The universal translator

To deliver a universal translator we must incorporate Aboriginal, and other Indigenous, languages. There is high local, national and international interest to help retain and empower Aboriginal languages. The opportunity is to capitalise on this momentum, and to translate it to transformative social and medical benefit. This can be achieved by pairing Aboriginal languages, through technology, to our genetic language.

In the words of an Aboriginal elder and former adviser to the Prime Minister: “I would love to be involved, (this could be done by) trusted young people working with old fellas…(as) intermediary translators….(for existing words). (Also) as culture is dynamic, if old fellas want to create new words (to help with Aboriginal health), young people can help them”. He has asked to be personally involved on this project and to broker relationships with key Aboriginal people and health leaders.

What we will do ?

We will document, help retain and empower language, and therefore children and youth. We will do this by creating and clinically implementing the Aboriginal language synonyms for Human Phenotype Ontology (HPO) terms.

An example of a HPO term is macrostomia. The plain language English synonym is large mouth. The Aboriginal Noongar language synonym is djaa koomba.

  We will use our approach to:

  1. Improve diagnosis, it has been shown that the use of HPO terms can improve diagnosis by 30%;
  2. Deliver a basis for educating and empowering children and youth about (genetic) health care;
  3. Connect children and youth to culture;
  4. Connect children and youth across the lifespan through to elders;
  5. Engage and empower children and youth through new technology and health care innovation;
  6. Create a basis for developing more culturally appropriate delivery of health services.

We acknowledge there are many Aboriginal languages. We will start with 2 languages, Noongar- the most prevalent Aboriginal language at PCH; and a regional language e.g. Kariyarra. Through that we will develop the means to extend to other languages, across shared language boundaries and then to more disparate languages. We then aim, through our international partners,to extend this other Indigenous Languages.

We acknowledge that much Aboriginal language is oral. Therefore we will also accommodate for this through harnessing spoken language using voice recording technology and voice-to-text conversion.

Facial languages are also critical. “We say you look ill”, “you look well” or “you look worried”. We have created the means to obtain “face language” from 3D facial images. That is, we can convert a 3D facial image into a text-based description, i.e. face-to-text conversion. Specifically converting a 3D facial image to human phenotype ontology terms. We will therefore also integrate a facial analysis component to both engage children and youth, and also to improve facial analysis and further enhance its integration with genetic testing.

Collectively, these approaches will be powered directly by the children and youth, to empower children and youth .  It will engage them and teach them through coding (computer language) and new technologies. We will deliver an app so that children and youth and their families can directly contribute by matching Aboriginal language to English, and through to the standardised computer language (Human Phenotype Ontology). To ensure that the impact of the App is enduring and also can be globalised for other Indigenous children internationally , it will be made interoperable with the knowledge management platform currently employed for state-wide service in WA Health, Patient Archive. Patient Archive is also implemented internationally in e.g the United States and Japan. Through this, children and youth will drive this transformation as active participants and crowd sourced citizen scientists . They will do this “in place” , that is from wherever they live and irrespective of whether they are at home or admitted as an inpatient or outpatient, and whether they are healthy or ill. To promote harmony , and as Aboriginal Health is everyone’s business, this app will be open to anyone- Aboriginal or Non-Aboriginal.

  We will pair elder’s and youth to ensure knowledge transfer across the lifespan , to connect for community across the generations. Today’s youth are tomorrow’s leaders, and the future is in their hands.

We will partner with the Aboriginal Health Council of WA (AHCWA), informed by the Western Australian Aboriginal Youth Health Strategy 2018-2023, including the AHCWA Youth Committee and AHCWA Youth Program Reference Group

The proposal has also attracted the support of the Chief Scientist of WA, Professor Peter Klinken. In his spare time, Professor Klinken is being taught the Noongar language by senior Aboriginal people.

We will work through, and build on, the success of local and international partnerships.

  The team we have and that we can draw on:

  • Community – represented through the Aboriginal Health Council of WA; through the Aboriginal Youth that form the Aboriginal Youth Health Committee, Precision Public Health Asia; and other children and youth.
  • Health Service Providers – Director of Aboriginal Health, Child and Adolescent Health Service; Clinical Geneticist; Australia’s first Genetic Counsellor for Aboriginal genetic health care; Clinical Genetics Registrar training in Paediatrics and Clinical Genetics.
  • Health System Managers : Director of the Office of Population Health Genomics, Division of Public and Aboriginal Health, WA Health; Aboriginal Genomic Policy Officer
  • Digital Health and Information Technology Experts – Computer Scientist; Systems Programmer Analyst and Ontologist, Research Assistant.
  • Scientists – Chief Scientist of WA; Computational Biologist.
  • Teachers – Principal; Teacher’s Assistant

We need new bright minds and open hearts, thinker and doers, to partner with us to deliver Life Languages.  The new team members needed to partner to accelerate and scale the delivery of this transformation:

  • a linguist,
  • a language teacher,
  • computer coding experts,
  • app developers
  • a program manager, preferably with existing speech pathology expertise, or wishing to develop such expertise
  • Senior persons/ elders, preferentially a women and a man given the contributions to culture of women and men.
  • Aboriginal health workers

WE NEED YOU !

The existing technology we will align:

  • 3D facial analysis
  • The Digital Health Platform, Patient Archive
  • Whole genome sequencing

The technology expansion that will drive further innovation and success:

  • handheld 3D cameras to: (i) accelerate and scale existing 3D facial initiatives supporting Aboriginal Health; (ii) for children and youth to be educated through and with new technology; and (iii) to build capacity for Aboriginal health staff.
  • Voice recording equipment, including that which is uniquely suited to both one-to-one and group discussion.
  • The Life Languages App.

  A meeting place to share and connect:

  • Specifically, to convene, learn from and be informed by the Youth Committee of AHCWA
  • Sharing and connection will also be delivered through Life Languages add which will build on existing multi-technology educational programs, such as Roc-Ed, in which team members already have key roles.

We are uniting the people through resources, partnerships and a shared vision. We are innovatively and equitably serving unmet need. This vision is being turned to action for sustainable, enduring and world leading impact.

 

The proposal is ambitious.

The potential is immense.

There is much to do.

We cannot do it alone !

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