Health equity project for Malaysian Deaf community wins Nature inclusive health research award
Professor Uma Palanisamy receiving the Nature Award for Inclusive Health Research.
A research project designed to tackle health inequality experienced by Malaysia’s Deaf community has won the inaugural Nature Award for Inclusive Health Research, awarded at a ceremony last week in Sao Paolo, Brazil.
The ‘HEAlth caRe needs of the Deaf (HEARD) project - Their healthcare communication, access and health promotion’, led by Professor Uma Palanisamy of the Jeffrey Cheah School of Medicine and Health Sciences at Monash University Malaysia, has been recognised by the prestigious scientific journal for its inclusive approach to research leading to greater health equity.
The HEARD project tackles the unmet health needs of the approximately 55,000 people in Malaysia registered as Deaf and hard of hearing who use Malaysian Sign Language, Bahasa Isyarat Malaysia (BIM), as their first language, and delivers practical solutions that should see significant improvements in their health outcomes.
A student-led health promotion project first found that the Deaf community avoids seeking healthcare for several complex equity reasons. A pronounced shortage of Malaysian sign language interpreters, a lack of Deaf cultural and linguistic competence in healthcare professionals and a lack of legal protections for Deaf people accessing health services were identified as significant barriers. The BIM vocabulary also doesn’t include all the signs needed to represent many health and medical concepts, leaving Deaf people further silenced and disempowered.
Professor Palanisamy said the findings demonstrated the need for urgent solutions to directly address the gaps.
“For every 800 Deaf people in Malaysia, there is only one Malaysian Sign Language interpreter,” she said. “When it comes to healthcare, this leaves Deaf people vulnerable to miscommunication, misdiagnoses and poor management of health conditions. So, we set about addressing these needs using a health equity research approach.”
HEARD project team members: Lucy Lim (President, Interpreters and Translators Association for Deaf Community Selangor and KL (JUPEBiM), Jennifer Ng (Deaf researcher), Professor Uma Palanisamy (Monash Malaysia), Dr Anthony Chong (MyBIM Secretary) and Dr Sabrina Jacob (Monash Malaysia, in absentia)
The HEARD team used a community-based participatory research method that sought to understand the health-seeking behaviour of the Deaf community and learn how healthcare professionals could improve their practice to better meet their needs.
HEARD teamed up with the Malaysian Federation of the Deaf (MFD), Interpreters and Translation Association for Deaf Community Selangor and KL (JUPEBIM) and the Malaysian Sign Language and Deaf Studies Association (myBIM). They employed a postdoctoral research fellow and research assistant with lived experience of hearing loss and included sign language interpreters at various stages of the process.
Local healthcare practitioners and medical students were also consulted, and the team sought international input through consultations with sign language and intercultural communication expert Professor Jemina Napier of Heriot-Watt University in Scotland, and instructional design and educational innovation expert Associate Professor Danielle Verstegen of Maastricht University in The Netherlands.
On considering the results, HEARD designed two main solutions. First, the team developed an app called Deaf In Touch Everywhere (DITE) to tackle the immediate communication gaps for Deaf people while accessing health care. Professor Palanisamy said that through the app, a person with hearing loss can connect with a pool of Malaysian sign interpreters through secure video conferencing, who can then be present virtually to provide interpreting.
“DITE also houses a medical sign language dictionary, a repository of health promotion videos translated into sign language, and a set of GIFS on health topics for use by health care professionals during consultations with Deaf patients,” she said. “ The app is now in beta testing phase, and we expect it to make a significant contribution to improving communication, diagnosis and clinical care.”
Sign for Neonatal Intensive Care Unit
Secondly, the team observed a lack of Deaf cultural competency and confidence among healthcare practitioners and medical students. So, HEARD designed and delivered best practice workshops to healthcare practitioners from Malaysian Medics International, whose membership is mainly comprised of newly graduated doctors. Professor Palanisamy said that the training was well-received, and will be rolled out further to reach more a wider range of practitioners.
“We’re also planning to open up this training globally through a massive open online course, delivered in partnership with the University of Maastricht,” said Professor Palanisamy. “Plus, we also aim to develop an additional course on mental health literacy through BIM, as well advocate for government policy changes to ensure the provision of onsite BIM interpreters in hospital settings.”
Professor Palanisamy is delighted and proud that Nature Awards have recognised the HEARD team’s efforts. “We are pleased that our research has the potential to make a significant difference to the health of the Malaysian Deaf community. We thank all of our partners and collaborators locally and internationally who have helped us achieve this outcome.”
Monash Medicine, Nursing and Health Sciences Deputy Dean of Research, Professor James Whisstock, said that the award win was a clear recognition of the project’s outstanding research impact. “Professor Palanisamy and the HEARD project team are to be commended for their work in radically improving health equity in a disadvantaged and marginalised group. This is an excellent example of inclusive health research with both immediate local impact and broad international reach.“
Read more about the award from Springer Nature and watch the brief summary video: