<<SPAN empowers patients and caregivers to become active partners in the care process and contribute in different areas of healthcare that affect them.>>

As a rectal and testicular cancer survivor, Mr Ellil Mathiyan Lakshmanan vividly remembers how he struggled with wearing a bag over a permanent stoma (for passing stool). Breast cancer survivor Ms Ai Ling Sim-Devadas, too, recalls how she had a difficult time coming to terms with her illness.

Motivated by their own challenges and journeys of recovery, both cancer survivors helm the SingHealth Patient Advocacy Network (SPAN) today. Together with 35 other members, they represent the voices of patients and help shape the healthcare they receive.

Reshaping healthcare

SPAN was established in March 2017 to empower patients as advocates for change in healthcare — a notable move away from the ‘doctor knows best’ model. With each of its members either a patient or caregiver, SPAN is deeply involved in various focus group discussions and workgroup committees to contribute to hospital campus planning, building design, new services, and the feasibility of new healthcare mobile applications. Last year, one of its members, Ms Khoo Sork Hoon, who is a breast cancer survivor, sat on the judging panel of the SingHealth Hackathon event, where she weighed in on the medical solutions brainstormed by the SingHealth and Duke- NUS community. Several members, such as Ms Melissa Lim, a brain tumour survivor; Ms Jessie Tan, a caregiver to her son with cerebral palsy affecting all four limbs; and Ms Carol Lim, a breast cancer survivor, also conducted talks, and shared ideas and experiences with healthcare staff and patients via various platforms.

“As the healthcare landscape evolves, there is an increased emphasis on the holistic patient experience, and a greater need to harness the patient’s voice in the design of healthcare systems and processes to improve care delivery,” said Professor Tan Kok Hian, Group Director and Senior Associate Dean, SingHealth Duke-NUS, Institute for Patient Safety & Quality (IPSQ) and co-advisor of SPAN.

<<SPAN members learned how to better engage with healthcare professionals during the Patient Advocate Communications Training course.>>

One important reason for involving patients is that they are uniquely able to see challenges and possible solutions that may not be immediately apparent to healthcare professionals. Their ideas are based on first-hand experiences, and have the power to improve the care and recovery journey for others.

For instance, SPAN spearheaded a meaningful initiative to introduce a Plain English Glossary that simplifies medical terms and jargon. A hundred and fifty commonly used medical-related terms were collated from patients, caregivers and staff, and simplified for the layman’s understanding, so as to help healthcare workers better communicate with patients and caregivers. Mr Chew Kim Soon, a caregiver to his elderly mother, was one of the key members who led this initiative. The Glossary has since been shared with more than 1,200 nurses and patient care ambassadors through myriad platforms, such as during nursing orientations and in-service sessions.

Partners in care

Being a patient advocate is not without challenges. “One of the key challenges is communicating the patient’s perspective in a constructive and effective manner so that healthcare staff can better understand their views and suggestions,” said Prof Tan.

To help members boost trust and collaboration with healthcare professionals, SPAN developed a half-day training course known as the Patient Advocate Communications Training (PACT) to empower them to be effective communicators and negotiators.

When patients and caregivers become equal partners-in-care, the whole healthcare community benefits immensely. This is especially so in today’s healthcare landscape, where patients are generally well informed as they have access to a wide range of information on diseases and the treatment options available.

“Patients and caregivers can share experiences, and exchange tips and ideas with others through support groups. They are not just passive recipients of care, but can be active partners in the care process and contribute in the healthcare decisions that affect them,” said Prof Tan.

SPAN aims to build a culture where empowered patients are at the heart of quality healthcare. This culture will have a positive impact particularly in Asia, where patient advocacy is less common, he added.