Dear HIFA
Thank you to all our contributors in our first week. We have exchanged 43 messages from 13 individual participants representing 11 countries (Côte d’Ivoire, Dominican Republic, Ethiopia, Germany, India, Kenya, Mongolia, Somalia, Switzerland, the United Kingdom, and the United States). Participants included public health specialists, clinicians, midwives, cancer advocates, health information professionals, patient advocates, researchers and WHO staff, providing a diverse and multidisciplinary perspective on cervical cancer screening, treatment and health information needs.
Here is a summary of the discussion so far, with a comment from me below. I used AI to assist with a first draft of this summary, which I then checked and edited for accuracy.
SUMMARY OF WEEK ONE
Several contributors reported that many women have little or no knowledge of cervical cancer and often regard cancer as a fatal disease rather than a preventable or treatable condition. In rural India, Diya Banerjee Sur noted that many women are unaware of cervical cancer, believe that absence of symptoms means there is no need for screening, and have limited understanding of treatment and survival. Similar findings were highlighted from studies in Ethiopia and India, where fear, fatalism, stigma, low awareness and misconceptions about screening were recurring themes.
The discussion identified common questions and concerns about screening and treatment. Women may ask whether screening will affect their sex life, whether a positive HPV test means cancer, whether screening is necessary without symptoms, whether screening procedures themselves can cause harm, and whether follow-up procedures are painful. Concerns about fertility, reproductive health and the social consequences of illness were also frequently mentioned.
Misinformation emerged as a major obstacle. A particularly influential rumour reported from India was the belief that HPV vaccination causes infertility. Contributors noted that misinformation can discourage uptake of both vaccination and screening, especially where understanding of HPV and cervical cancer is limited. Fear of pain during diagnostic procedures and misconceptions that cancer is inevitably fatal further influence decisions to avoid care.
Many participants stressed the importance of trusted local messengers. Examples included community health workers, ASHA workers, midwives, clinicians, community leaders and women who have survived cancer. Several contributors argued that people with lived experience can help others to reduce fear, counter myths, explain the benefits of early diagnosis and treatment, and encourage screening uptake. Experience from rural India suggested that survivor-led advocacy has been particularly effective in overcoming reluctance to participate in screening.
Stigma was repeatedly identified as a barrier. Contributors described fears that screening might imply sexual activity or infidelity, concerns about discussing reproductive organs, embarrassment associated with examinations, and social stigma associated with a cancer diagnosis. WHO guidance and published literature cited in the discussion emphasise the need to address stigma as part of cervical cancer elimination efforts.
A broad range of strategies to improve access to reliable information were proposed. These included community awareness sessions, school-based education, participatory women’s groups, social media campaigns, local-language communication, engagement of community leaders, peer education, outreach activities and counselling. Contributors emphasised that information should be culturally appropriate, non-technical and delivered through trusted channels.
Several contributors highlighted that information alone is insufficient. Women also need accessible, affordable and trusted services, effective referral pathways, follow-up mechanisms and functioning health systems. Experiences from the Dominican Republic illustrated the value of proactive screening programmes and trusted clinician-patient relationships, while examples from Mongolia demonstrated how telemedicine can strengthen diagnostic services and specialist support. Structural barriers such as poverty, distance from services, workforce shortages and legal obstacles affecting undocumented populations were also recognised.
Overall, the discussion so far suggests that improving uptake of cervical cancer screening and treatment requires a combination of reliable information, community engagement, improved health literacy, active countering of misinformation, survivor involvement, stigma reduction and accessible, well-coordinated health services. These elements are seen as essential for achieving WHO’s cervical cancer elimination goals.
COMMENT (NPW): We have learned a great deal from HIFA members in India, thanks to Diya Banerjee Sur, Anu Mary Oommen, Cherian Varghese, Narsimha Raju Dichpally. We also have insights from Dominican Republic (Frank Brightwell) and Somalia (Amal Abdikarim Yusuf). It's important that we hear from other countries. Below are our six guiding questions:
1. How do people in your community or workplace generally perceive cervical cancer? Please describe the common concerns, beliefs, or attitudes you notice.
2. What questions do people commonly ask about cervical cancer screening and treatment?
3. What inaccurate, misleading or confusing information about cervical cancer have you come across in your setting? Can you share an example?
4. Can you share an example where information or misinformation influenced someone’s decision to seek or avoid cervical cancer screening or treatment?
5. What sources of information about cervical cancer do people in your setting rely on most? Which sources are helpful, and where do you see gaps or weaknesses?
6. What could be done to help people find, understand and use reliable information about cervical cancer?
Please consider any of the above questions (or indeed any aspect of cervical cancer) in relation to your personal/professional experience and/or your country.
To contribute send email to: hifa@hifaforums.org
To review previous messages: www.hifa.org/read
With thanks, Neil
HIFA profile: Neil Pakenham-Walsh is coordinator of HIFA (Healthcare Information For All), a global health community that brings all stakeholders together around the shared goal of universal access to reliable healthcare information. HIFA has 20,000 members in 180 countries, interacting in four languages and representing all parts of the global evidence ecosystem. HIFA is administered by Global Healthcare Information Network, a UK-based nonprofit in official relations with the World Health Organization. Email: neil@hifa.org