Coronavirus (893) Definition of infodemic (4)

13 August, 2020

Dear Chris and all, [with reference to: http://www.hifa.org/dgroups-rss/coronavirus-882-lancet-piece-infodemics-... ]

WHO DEFINITION AND TYPES OF INFORMATION

In a previous message [http://www.hifa.org/dgroups-rss/coronavirus-881-lancet-piece-infodemics-... I challenged WHO's definition of infodemic (an “overabundance of information — some accurate and some not — that makes it harder for people to find trustworthy sources and reliable guidance when needed”). For practical purposes, I proposed three types of information:

1. accurate (and useful to the user)

2. accurate (and not useful to the user)

3. inaccurate

A more useful definition of 'infodemic', I suggested, would include the unhelpful aspects of information only (#2 and #3), and would exclude information that is accurate and useful.

USERS

My thanks to Chris Zielinski, who responded to my challenge.

Chris suggested that 'you can split the third one as well:

3. inaccurate (and useful to the user)

4. inaccurate (and not useful to the user)

"The user" in this case [says Chris] is the person who posts the inaccurate information and those who receive it. So 3 is deliberate mis/disinformation, while 4 is a simple error.'

I should perhaps have made clear in my original message what I mean by 'user'. I am thinking here of the person who accesses and uses information to inform themselves to protect their own health and the health of others (not the person who 'uses' information for nefarious or other purposes). (Chris also proposed an alternative definition 'An infodemic is a disease of the knowledge system characterised by: 1) a catastrophic increase in the volume of true and false information about a single core topic; 2) the episodic flow of rumour/mis/disinformation related to all aspects of the topic; 3) a struggle to establish a balance between a scientific interpretation of the facts and politically, ideologically and commercially inspired narratives; and 4) the hyperactivity of technological methods used to conduct and disseminate the discourse.')

REVISITING THE WHO DEFINITION

I believe it is more helpful to address the 'infodemic' from an information needs perspective. As many members of HIFA will be familiar, the concept of information needs is multifaceted but can/should be a starting point for information empowerment. I and others have written about this previously - see for example Neil Pakenham-Walsh (2012) Towards a Collective Understanding of the Information Needs of Health Care Providers in Low-Income Countries, and How to Meet Them. Journal of Health Communication, 17:sup2, 9-17, DOI: 10.1080/10810730.2012.666627 https://www.tandfonline.com/doi/full/10.1080/10810730.2012.666627). Information needs are highly contextual, dependent on specific circumstances of the specific user at any given specific time: context/need, language, format, educational level...

Coming back to the WHO definition, I first proposed, and maintain, that #1 ('accurate information that is useful to the user') should be excluded from the definition of infodemic. After some reflection, I consider that #2 (accurate and not useful to the user) has little if any place in the definition either. Why? Because such information is pervasive across human society, including information on any health issue, whether it's about COVID-19 or cancer. It is not a defining characteristic of an infodemic. There will always be lots of information (on any subject) that is 'accurate and not useful' to a specific user', simply because every user has unique needs. To stretch the infodemiology, information that is accurate but not useful is profoundly 'endemic' across all areas of health.

'Why does a definition of infodemic matter?" some may ask. It matters not because of some abstract need for a scholarly consensus, but for providing the conceptual starting point to address what I see as essentially a problem of inaccurate information (in all its forms). It is only by focusing our efforts on misinformation - and the determinants of misinformation - that we can reduce the harms of the infodemic.

In addressing misinformation, we need to go beyond trying to stifle and counteract misinformation as it appears. We need to address the underlying determinants. These include, at root, (1) our collective failure to empower people with accurate information to protect their own health and the health of those for whom they are responsible, together with (2) a parallel failure to empower them to differentiate between accurate and inaccurate information. Never has the vision of HIFA been so important. I'm delighted to be working with Chris, Geoff Royston and others on the HIFA Steering Group to develop these ideas further, and I am sure we shall be coming back to you, HIFA members 'at large', for your inputs.

I would also really like to hear from anyone on HIFA who was involved in the two weeks of the closed sessions of the recent WHO Infodemiology Conference. We look forward to read the deliberations and papers of the conference; to continue the discussion here on HIFA; and to contribute to the development of a Global Action Plan that I believe is needed both to empower people with the information they need to protect their own health while protecting them from misinformation. These two challenges should be addressed together. HIFA, the British Medical Association and The World Medical Association have already endorsed the seven elements of such a plan, publicised in a recent BMJ editorial by Editor-in-Chief Fiona Godlee and me: https://www.bmj.com/content/368/bmj.m759.full

All the above is offered as a personal reflection, and I look forward to your comments and further inputs. This is a complex global health challenge that requires an interdisciplinary approach with open sharing of experience, expertise and ideas.

Please spread the word and invite others to join us: www.hifa.org/joinhifa

Best wishes, Neil

Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org

HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare In

formation For All - www.hifa.org ), a global community with almost 20,000 members in 180 countries, interacting on six global forums in four languages (English, French, Spanish, Portuguese). Twitter: @hifa_org FB: facebook.com/HIFAdotORG neil@hifa.org

in a form that is useful which exists across the health spectrum.

This would my proposed revision of the definition even more contentious, but I think there is a case to be made.

Why exclude #2?

"In the flood of information pouring out on the novel coronavirus, who can truly say what is 100% accurate?"

Indeed, but I think when WHO defines an infodemic as "overabundance of information — some accurate and some not — that makes it harder for people to find trustworthy sources and reliable guidance when needed" it is not being absolutist. It is proposing a definition that would assist our focus and thinking with regards to dealing (primarily) with misinformation.

With regards to your notes on velocity of spread etc. I agree these are important characteristics of an infodemic, but my focus here is whether or not the definition should include accurate information and, if so, whether it should include accurate information that is useful to the end-user.

A definition of infodemic is important not for the sake of scholarly consensus, but for guiding interdisciplinary focus on how to address it. I would suggest our focus should not be to suppress all accurate and inaccurate information, as might be implied by the definition, but to recognise that some 'accurate' information is useful while some is not, and to recognise also that this 'usefulness' is highly contextual, varying from person to person and from situation to situation.

Having said this, I would add there is a case for suggesting the term infodemic should *only* include inaccurate information. After all, the difference between useful and non-useful accurate information are not peculiar to infodemics. What really matters is to empower users to find accurate information that is useful to them, while protecting them from misinformation.

(I recognise I do not define the term 'useful information' above. When I use this term I refer to information that is both accurate and appropriate to the needs of the user: specific context/need, language, format, educational level...)

In his second message [http://www.hifa.org/dgroups-rss/coronavirus-883-definition-infodemic-3], Chris suggested the following new definition of infodemic:

"An infodemic is a disease of the knowledge system characterised by: 1) a catastrophic increase in the volume of true and false information about a single core topic; 2) the episodic flow of rumour/mis/disinformation related to all aspects of the topic; 3) a struggle to establish a balance between a scientific interpretation of the facts and politically, ideologically and commercially inspired narratives; and 4) the hyperactivity of technological methods used to conduct and disseminate the discourse."

I agree but maintain that accurate information that is useful to the user should not be included in the definition. I think the focus indeed should be on inaccurate information.

Chris suggests there is inaccurate information that is useful to the user, and inaccurate that is not useful to the user, and says "The user" in this case is the person who posts the inaccurate information and those who receive it.

We need to clarify what we mean by 'user'. In my messages on this topic, my intention was to focus on those who seek and use information to protect their own health and the health of others, and not those who disseminate information.

In conclusion, I am not persuaded that the WHO definition "overabundance of information — some accurate and some not — that makes it harder for people to find trustworthy sources and reliable guidance when needed" is helpful. For me, it would be more pragmatic to define an infodemic simply as an "overabundance of inaccurate information that makes it harder for people to find trustworthy sources and reliable guidance when needed".

Best wishes, Neil

Let's build a future where people are no longer dying for lack of healthcare information - Join HIFA: www.hifa.org

HIFA profile: Neil Pakenham-Walsh is coordinator of the HIFA global health campaign (Healthcare Information For All - www.hifa.org ), a global community with almost 20,000 members in 180 countries, interacting on six global forums in four languages (English, French, Spanish, Portuguese). Twitter: @hifa_org FB: facebook.com/HIFAdotORG neil@hifa.org