In an exclusive interaction, Ranjit Kaur, Immediate Past President of the Breast Cancer Welfare Association Malaysia and Advisory Board Member of the Asia Pacific Oncology Alliance (APOA), shares insights into the upcoming APOA report. The discussion focuses on addressing misinformation and stigma in cancer care, highlighting the crucial role of patient representatives, community organizations, and healthcare leaders. Kaur emphasizes collaborative efforts to dispel myths, reduce social stigma, and advance cancer control efforts in the Asia Pacific region.

The Asia Pacific Oncology Alliance (APOA), a network of stakeholders from across the cancer continuum who are committed to improving cancer care in Asia Pacific, will be launching a report highlighting the importance of the patient voice in improving cancer care, support and outcomes.

The report, which will be available here on 30 November, was compiled from more than 100 interviews with key stakeholders including patients, patient support organisations and other community groups, clinicians, researchers, multiple industries, and healthcare decision-makers. Ranjit shares more about how misinformation and stigma remain burdens to optimal cancer care and outcomes. 

• How significant are stigma and misinformation as barriers to better cancer prevention and care in the Asia Pacific region, and what specific challenges do these pose?

From word of mouth to social media, stigma and misinformation have become major barriers in cancer prevention and care in the APAC region. The uncertainty and fear of cancer and its recurrence have heightened social stigma.

For example, in a number of traditional Asian communities, tobacco use has been part of their culture and lifestyle. When they are given information regarding the link between tobacco and cancer, they tend to say that there are people in their community who had been using tobacco and they lived till a very old age. There seems to be a gap between scientific evidence and beliefs in such communities. 

Social stigma and rejection medical treatment can lead to diagnosis and treatment at later stages of the disease coupled with suffering and eventually premature deaths. Failure to cure the disease at advanced stage of cancer also makes the community mistrust western healthcare services. Furthermore, the higher the premature mortality, the worse the stigma because in such situations, more often than not, western healthcare services are considered a failure and blamed for the premature deaths. Individuals and scamming entities offering alternative remedies to cancer tend to entice patients and market to them by promising a “cure” for the disease equipped with anecdotal information and selected testimonies lacking research and clinical trials. 

Communities are driven and influenced by marketing and advertisements showing that the disease can be cured without surgery or chemotherapy. They also feel better supported by the alternative remedy scamming representatives who spend unlimited time marketing their products and services. They have very good communication skills, talking to patients in the way they understand. 

On the contrary, western healthcare professionals are scientifically driven and they provide patients with evidence-based information, and scientific facts and survival rates. Due to shortage of manpower, healthcare professionals have limited time with each patient and in such situations, there is a communication gap in how and how much patients understand. This gap leads to marginalisation of patients and further creates an environment for the patient to seek alternative remedy scammers because the patients understand what is being said. 

The above factors can lead to individuals making wrong treatment choices. 

• As misinformation is often amplified through online platforms, how can patient representatives, community organizations, and healthcare leaders collaborate to effectively fight misinformation and ensure accurate information reaches the public?

Social stigma seemed to have reduced over the years, however, there is an increasing need for more work to be done to enable the public to be better informed. 

Communication, health literacy and education are of utmost importance in convincing the public to fight misinformation regarding cancer prevention, treatment and supportive care. Receiving scientific, medical and technical information in lay language is crucial in patients making informed decision about treatment. 

Patient representatives and organisations can proactively offer information, psychosocial peer support and demonstrate that there are improved outcomes and survival rates through early detection and timely medical treatment. Psychosocial support is important to help patients and families to manage their emotional, practical, social, financial and vocational issues. Navigating patients through the complex healthcare system is important to familiarise them with the different investigation and treatment procedures. Patient organisations can develop and provide health literacy materials on cancer prevention and care to help dispel myths and reduce stigma in public. Patient group leaders should be trained to equip themselves with additional knowledge and skills in offering information, support and participate in advocacy for policy change.

Individuals with lived experience of cancer are role models of improved survival rates and a return to normal life after early detection and timely medical treatment. Patient support groups can offer support and hope for newly diagnosed patients. However, individuals with lived experience need to be trained on how to share information with the public and how to offer peer support and information to newly diagnosed patients. 

Patient groups, community organisations and healthcare leaders can jointly advocate for better health policies, and equitable access to screening, diagnostic and medical treatment services. Patient groups can also support local research, cancer registries and data collection. 

The higher the number of individuals living with cancer being visible in public, the greater the chances of the community believing that western medical treatment can save lives and offer improved survival rates. In this context, health literacy and communication skills of healthcare providers go hand-in-hand to enable patients to firstly, understand their condition and secondly, make informed choices of western medical treatment. Healthcare providers need to be trained in soft skills such as adopting empathetic skills, developing better communication skills, and explaining to the patient at the level of language of the patient’s understanding. The diagnosis of cancer has an intense psychological impact on affected individuals. Patients facing distress should receive psychological support immediately after the bad news has been given to them. 

While there is a rise in cancer incidence, there is a need for all countries to simultaneously keep up with creating new positions, posts, training and career pathways for healthcare providers such as oncology nurses, patient navigators and clinical psychologists (psycho-oncologists), who can help fill in the gap by offering their time to address issues patients are facing and help dispel myths. Well-trained and certified oncology nurses and patient navigators are crucial in helping patients to be better informed and to reduce social stigma regarding cancer prevention, and care. The multidisciplinary team should also include peer support volunteers. 

• In your view, what role does community awareness and understanding, involving local governments and volunteers, play in combating misinformation and advancing cancer control efforts in the region?

Community awareness programmes over the years have certainly enabled better informed communities, thereby helping to reduce social stigma, but more work needs to be done. 

A growing number of community leaders and organisations are partnering with cancer service organisations and patient groups to organise and implement public awareness events including cancer screening, seminars and talks by healthcare experts and patient leaders. 

Local and district municipal councils play an important role by displaying information to refute myths and reduce social stigma on cancer. The most common information is information on the association between tobacco and cancer. They can increase the number of physical billboards and social media advertisements regarding prevention and care of cancer, including showing pathways of how and where the public can seek help. Local authorities can also have policies on ensuring that advertisements and public information relating to cancer are evidence-based. 

Patient advocates are key members of the multidisciplinary team to educate the public through demonstrating the fact that survival rates can be improved through western medical treatment. A number of patients organisations conduct outreach projects by bringing community awareness on prevention, screening and navigation services for cancer care to rural areas in order to ensure that the residents are better informed and they are familiar with the healthcare services. 

Patient support organisations are in the right place to offer community awareness on cancer prevention and treatment. They are also a good source of health literacy regarding cancer by offering information on prevention, treatment, rehabilitation and recovery in the language of choice of the local communities. Women’s groups are usually looking for projects that they can do for the benefit of local women in the community. Similar community events on cancer control are organised in partnership with healthcare experts and patient organisations. 

The public likes to hear stories of individuals experiencing and managing their cancer challenges. A number of Asian communities learn facts through story telling. The factual information is usually embedded in these stories. In this way, the audience is able to understand the facts and learn the pathway to screening, diagnostic and treatment services. They learn that with early detection and timely medical treatment one has better survival chances. 

Religious organisations have also come on board to organise cancer screening and talks on cancer prevention and care by medical experts for their congregation during special occasions.