Dear HIFA colleagues,
Thank you to everyone who has contributed your experience and expertise to this discussion on understanding information needs to improve uptake of cervical cancer screening and treatment. We are now approaching the end of week 3 in our 6-week discussion.
We have already learned a lot. We have exchanged 80 messages from 17 contributors in Côte d’Ivoire, Dominican Republic, Ethiopia, Germany, India, Kenya, Mongolia, Somalia, Switzerland, United Kingdom and United States.
We have at least partly addressed the six guiding questions, and more:
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?
Members have highlighted the extent of limited awareness, fear and stigma surrounding cervical cancer. We have heard about misconceptions concerning screening, HPV vaccination, fertility and the meaning of a positive test result. Members have also described how information and misinformation can influence women's decisions to seek or avoid screening and treatment.
A few things that I found especially compelling:
1. The importance of cancer survivors as a trusted medium for reliable information, whether as part of women's groups or other community settings.
2. Similarly, the central role of trusted primary healthcare providers who are often known to women for routine health services
3. The importance of reproductive health education in schools and how this varies widely depending on country.
There are three areas where I would particularly welcome further contributions:
1. Reaching women who are least likely to receive reliable information
What approaches have you found effective in reaching women who are socially or economically marginalised, live in remote areas, have limited literacy, or face cultural barriers to discussing reproductive health? What has worked well, and what has not?
2. Learning from women's own experiences
Can you share examples of how women themselves – including cervical cancer survivors – have helped to shape health education, challenge misconceptions or encourage others to seek screening and treatment? How can their voices be better included in the design of information and awareness programmes?
3. Understanding the sources of misinformation and how it spreads in different communities
We have heard some examples of misinformation and would welcome other examples. Do we have an understanding of where this misinformation comes from? To what extent is it linked to mistrust in authorities and/or health workers? It's notable that in many high-income countries, health workers enjoy a high level of trust, but is this seen also in LMICs?
Insights from this discussion will be synthesised in a report to help inform future WHO advocacy and knowledge products on cervical cancer screening and treatment.
*** What more can we learn from your experience? We would particularly welcome contributions from countries and settings that have not yet been well represented in our discussion, and examples drawn from your personal or professional experience.
*** Please email your thoughts to: hifa@hifaforums.org
Many thanks again for sharing your knowledge and helping us build a better understanding of how reliable information can improve the uptake of cervical cancer screening and treatment.
With best wishes,
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