Dear Bernard and all
[in response to Bernard Seytre, France: https://www.hifa.org/dgroups-rss/updated-hifa-strategy-2022-2024-strateg... ]
Thank you for your comments. You have re-opened a rich line of discussion and I invite others to contribute.
"1. Understanding information needs. This is a major issue if one wants to avoid top-down communication. An accurate information not adapted to the 'needs,' the representations of the target population, won't be effective and, worse, could be detrimental... HIFA might emphasize that to be effective health information/communication must be based on scientific studies of the representations of the target populations."
Yes, I agree that an understanding of information needs is vital, and indeed is fundamental to the global healthcare information system ('evidence ecosystem') described on the HIFA website: https://www.hifa.org/about-hifa/hifa-vision-and-strategy There are multiple aspects: social and anthropological, as you mention, as well as issues of trust, hostility and the explosive potential of rumour and misinformation (fuelled by connectivity and social media). There is also a question of 'perceived needs' and 'actual needs' which I explored in a paper in Health Communication: Towards a Collective Understanding of the Information Needs of Health Care Providers in Low-Income Countries, and How to Meet Them. https://www.tandfonline.com/doi/full/10.1080/10810730.2012.666627
You give the example of false rumours about polio vaccination in Pakistan. Here, the rumours were not caused by health information providers (publishers, ministries of health, librarians...), but was famously related to many factors including the US CIA's efforts to track down Osama Bin Laden through a fake polio vaccination drive. To this day, polio vaccine murders are being murdured by fundamentalists. Fundamentalists have information needs too, and their needs can potentially be reached through religious leaders who are increasingly taking a stand to protect women and children.
In practice, I am not sure to what extent health information providers are able to base their work on 'scientific studies of the target populations'. I would be very interested to learn more about how the big players (such as WHO) use such research in their information and publication services. At the other end of the scale, how do small health information providers (for example, local NGOs) use such studies? A related question is: What is the place of previous research vis a vis specific needs assessments? How often are either approach used, and what are their strengths/limitations?
More generally, what *do* we know about the healthcare information needs of different user groups (general public, health workers, policymakers)? Whatever we are doing, I believe we continue to be failing the majority of the world's population. I give the example of parental knowledge about the treatment of acute diarrhoea in India. Back in 2005, the national DIstrict Health Survey reported that 4 in 10 children with diarrhoea are given less fluid than usual, when they should be given more. The latest DHS (2015/2016) found that 'more than half of children with acute diarrhoea receive less to drink than normal (and one in 20 receive no fluids at all), thereby tragically increasing their risk of death. The survey also showed that 1 in 5 children with diarrhoea seen by a health worker are inappropriately given antibiotics.' This suggest that, if anything, the situation is getting worse with regards to parental basic healthcare knowledge to treat child diarrhoea. This is an indictment of the global health community.
It is also, I concede, an indictment of HIFA. In reality, bringing people together on online forums to discuss aspects of healthcare information will never be sufficient to achieve our vision of Healthcare Information For All: a world where every person has access to the reliable healthcare inforamtion they need to protect their own health and the health of others.
To do this, we need to up our game. Earlier this year Global Healthcare Information Network (the small non-profit that administers HIFA) was admitted into official relations with the World Health Organization. We have a compelling Strategic Plan 2022-2024, where our number 1 priority is to "Convene key stakeholders to develop a Global Action Plan on Universal Access to Reliable
Healthcare Information". It's time for us to build on our past successes, our 20,000 HIFA membership base and our 400+ supporting organisations, and secure high-level political commitment.
There is no doubt that an understanding of the many aspects of healthcare information needs - and how to meet them - will be central to the initial situation analysis that is required. I invite HIFA members to share their experience and examples of publications that can help us in this direction.
Best wishes, Neil