In 2012, fresh out of a rectal cancer surgery and resting in his hospital bed, Mr Ellil Mathiyan Lakshmanan learnt that his surgical team had found and removed a second tumour in his groin – a previously-undetected second cancer. To his horror, he also discovered that the other patients in his six-bedder ward had overheard this harrowing update from his doctor, despite his bed curtains being drawn.
"I wasn't ready to share this information with anyone else, let alone with total strangers," he said. "I'm grateful for my excellent healthcare team, but sometimes it's little things such as these that can get overlooked."
This is one of many patient perspectives Ellil has been sharing with care teams as part of his role as mentor and former co-chair of the SingHealth Patient Advocacy Network (SPAN) – a self-driven network of patients and caregivers that represents the collective voice of patients. Through providing feedback from the ground, they hope to improve the quality of care and experience among patients and caregivers across SingHealth.
Since Ellil's feedback was shared with his care team, such sensitive discussions are now held privately in family conference rooms.
For patients, by patients
Since 2018, Ellil, along with his fellow mentor and former co-chair Ms Ai Ling Sim-Devadas, have volunteered their time and effort in pioneering and growing SPAN. Together with some 50 members, they continue to actively co-create initiatives and programmes with care teams across SingHealth to bring forth patient voices based on real stories – all in the hope of improving the patient and caregiver experience.
"We don't just highlight areas for improvement – we also provide feedback on what is already being done well and how those areas can be further developed to benefit patients even more," shared Ai Ling, who underwent breast cancer treatment in 2017. She was approached to co-lead SPAN with Ellil the following year.
Much like Ellil, she too had unique experiences in her patient journey. During the course of her treatment, for example, a breast care nurse had given Ai Ling her mobile number in case she encountered any challenges with her post-surgery care. The nurse also checked in frequently on how she was coping during her treatment and recovery.
"She wasn't only calling for updates on my recovery, she also showed genuine care and concern for how I was doing as a whole – physically, mentally and emotionally. This was especially reassuring for me after my major surgery. Her personal touch is a good example of what could be done to give patients better support, and I believe it is important for healthcare professionals to try and connect better with their patients in their own ways," shared Ai Ling.
Their critical role
From humble beginnings as a series of informal feedback sessions and focus group discussions, SPAN continues to grow, recruiting new members from recommendations by nurses leading patient support groups, or through winners of the annual Singapore Health Inspirational Patient & Caregiver Awards (IPCA).
The network advocates for patient-centred care even beyond our shores, through its roles on advisory boards and at international and regional events such as The Economist's Future of Healthcare Week, and the International Alliance of Patients' Organisations' Asia-Pacific Patients Congress.
In close collaboration with the SPAN secretariat, Ellil and Ai Ling have also put in place a training framework to better prepare and equip new members. The Patient Advocate Communication Training programme equips new members with the skills to get their perspectives across effectively by applying techniques to encourage trust and openness, and to deal with difficult situations.
Another priority for SPAN is their campaign for kindness in the healthcare system, both in SingHealth and beyond. During the course of the COVID-19 pandemic, the increase in number of reports on the abuse of healthcare workers concerned them greatly. With the belief that kindness in healthcare is critical for the well-being and safety of both patients and their care teams, the network has since conducted webinars and launched social media campaigns to promote compassion and respect between healthcare professionals and patients.
"As patients, we should also bear in mind that healthcare professionals, while giving their all in caring for us, are also human just like you and I. Being kind in our interactions can go a long way," explained Ellil.
The road ahead
Looking back on their journey after stepping down from their co-chair appointments in 2022, Ellil says his proudest accomplishment was the crowdsourcing of over 800 language translators for migrant workers under two days' notice and amid high uncertainty. This was during the circuit breaker in mid-2020, when COVID-19 was spreading fast in migrant worker dormitories. The volunteer translators played a crucial role in helping the workers understand what was happening during their diagnosis and treatment, and reassuring them that they were in good hands.
For Ai Ling, it has been proving their credibility as a patient advocate group and their growth in influence. SPAN was even roped in at the planning stages of the upcoming Emergency Medicine building, National Cancer Centre Singapore (NCCS) building and Singapore General Hospital's (SGH) Elective Care Centre (ECC) to provide input on patient touch points, such as the positions of patient beds in the wards, directions in which doors open and wayfinding.
Their aspirations for SPAN's future? To continue growing in strength, and building a higher level of trust between care teams and patients through various engagement platforms.
"There are many patient support groups out there, and people like us who are passionate about elevating the collective voice of patients," said Ai Ling. "We hope to continue seeing patient advocates being involved in projects across SingHealth to continually enhance the patient and caregiver journey. We also hope to build this culture of patient advocacy in Singapore. To kick-start this, SPAN organised the inaugural Singapore Patient Advocate Connection (SPACe) Symposium in October 2022 to provide a platform for like-minded patients, caregivers and healthcare professionals to come together and share their experiences and expertise. We were encouraged with the success of this event, and look forward to hosting it annually!"
Beyond patients, Ellil and Ai Ling are also cognisant of the benefit SPAN's efforts will continue to have on healthcare professionals. "We're in a shared environment, so each party's well-being will have a profound impact on the other. In working closely together, we hope to be able to transform the human experience in healthcare. At the end of the day, healthcare is about human beings caring for other human beings, so it is equally important that we, as patients and caregivers, support and work closely with the healthcare professionals who look after us.