Mapping the ‘information’ genome for COVID-19

It’s never been more important for people to have speedy access to the right information. Until we have a vaccine, information is our vaccine. Until we have a vaccine, testing is our vaccine. Even when we have a vaccine, we will still need to provide lots of quality information. We will always have to address fake news, antivaxxers, and those dark state actors waging misinformation wars.

The Web is a powerful way to quickly deliver information to a large audience. Yet it is the Web’s strengths that are also its weaknesses. The Web makes it easy and fast to publish, but that doesn’t mean that it’s easy and fast to find and understand. The Web has created a culture of speed publishing, where the imperative is to get as much as possible published as quickly as possible.

Organization, structure, editorial decision making, often basic editing are neglected. The format, the tool, the latest gizmo dominates thinking and decision making. In much web management it is more important to launch an app or dashboard, website, video or podcast, than to ask why, what and how. Why do we need this? What is it going to do? How is it going to be organized in a way that is usable? Basic questions. Rarely asked.

In 25 years working on websites, one problem dominates year in, year out. A problem nearly nobody wants to address, except in the most trivial of ways. Why? Because it’s not seen as cool, as innovative. Because there’s no bonuses for doing it well, no career progression because of it. It’s a thankless, really hard job. It’s a vital job.

Confusing menus and links cause untold problems to people trying to use websites. Yet, in 9 out of 10 web projects I work on, the menus and links are thrown together in a haphazard and wholly unprofessional manner. It’s sad how bad we are at organizing content. It’s sad how little management cares about information structure, about classification, about metadata. The Web suffers—we all suffer—because of it.

WHO have decided to do a deep analysis of what sort of information truly matters to the public and professionals when it comes to COVID-19. A multidisciplinary, cross-national effort was set in train involving collaboration from health agencies and experts in Ireland, Norway, Canada, UK, Belgium and New Zealand. We gathered data on searches, supports calls, requests, feedback. With representatives from these agencies and individual experts from other countries, we sifted through this research using the Top Tasks method.

Hundreds of people were involved. It was a continuous improvement, rapid, iterative refinement effort. We never lost sight of the people who need this information and the language that they use.

Below you will find our coronavirus tasklist / checklist, our attempt at mapping the information genome for COVID-19. We will now go out to the public and professionals and ask them to help prioritize this list. We will then work with them to co-design a structure, an information architecture (IA) for COVID-19. We will test, test, test our way to a great IA. The plan is to create an IA pandemic template that will work for COVID-19 and future pandemics.

Everything will be made freely available. Every step in the process will be transparent and open. The public and professionals will be core participants in the design process. We will define “easy” based on evidence of ease-of-use, not on someone’s opinion.

Feel free to use what we have done so far. And if you’d like to be part of the process, get in touch.

About WHO (mission, members, funding, donors)
Animals and virus (get it from, give it to, walking)
At-risk, vulnerable (age, pre-existing conditions, disabilities, ethnic minorities)
Avoiding physical contact (social / physical distancing, self-isolation)
Business participation, new products, ideas
Caring for a vulnerable, at risk person
Caring for someone with virus at home, yourself with virus
Cleaning, disinfecting, waste disposal (hands, deliveries, home, workplace)
Community-based support groups, local networks
Compare statistics (country, local, tests, cases, recoveries, deaths, demographics)
Compare symptoms with cold, flu, allergies
Confined living, dealing with being inside (activities, entertainment)
Confirmed cases, deaths, recoveries (daily, total)
Contact WHO (media, experts)
Deliveries, online shopping, post
Diagnosis 
Diet, food, nutrition, supplements
Digital democracy (participation, feedback, policy development, reform)
Domestic, sexual abuse, violence
Drugs (preventative, treatment, development, approved)
Dying alone, funeral rites, mourning, grief
Emergency contacts (ambulance, medical)
End date, new normal, safe again
Essential services, key / critical workers
Explaining pandemic to children (guides, resources, advice)
Explaining pandemic to those with learning difficulties (guides, resources, advice)
Financial support, assistance, benefits (eligibility, availability)
Food, medicines, essential products (stocks, hoarding, availability, disruptions) 
Government guidance, regulations (national, local)
Government roles, responsibilities, who’s in charge of what?
Government strategy (long-term control, lockdown exit, transition, economy reboot)
Health services unrelated to pandemic (appointments, prescriptions, treatments) 
High risk transmission environments, (care homes, restaurants, supermarkets)
Home schooling, remote teaching, learning (tips, how-to, advice)
Immunity, antibody testing (criteria, availability, accuracy)
Incubation period, time from infection to symptoms
Industry / sector specific advice (airlines, funeral homes, supermarkets)
Infection hotspots, clusters, exposures (near me, identifying, tracking)
Infectiousness (when most infectious, super spreader, symptom-free but infectious)
Latest news, latest research (alerts, directives, updates)
Likely course of illness, outcomes, prognosis
Mental health, wellbeing
Modelling, forecasting, trends (flattening curve, economic impact)
Money issues, personal finances, savings, pensions
Movements, interactions of infected people (tracking, contact tracing)
Myths, fake news, misinformation, out of date information
New outbreak, second wave (response, containment)
No longer infectious (criteria, time required in self-isolation)
Number of tests (tests performed, individuals tested)
Original outbreak source, patient zero (global, national)
Personal protective equipment (PPE: masks, shields, gowns)
Physical wellbeing, exercise, breathing exercises
Post recovery complications (neurological, cardiac, respiratory)
Pregnancy, birth, infants (precautions, advice, breast feeding)
Privacy rights, data protection, anonymity (apps, personal health data)
Professional medical training, courses
Public health campaign material, posters, communications, educational resources
Raw data, open data, datasets, metadata
Relationships (family, friends, colleagues)
Research ideas, submissions, funding, grants
Research papers, studies
Scams, cybersecurity threats 
Sexual, reproductive health, rights
Symptoms, signs
Technology support for less experienced, vulnerable, reduced income
Testing for live / active virus infection (eligibility criteria, availability, accuracy)
Transmission, spread, epidemiology
Travel restrictions (quarantine, lockdown)
Treatment lessons learned, emerging best practice, failed treatments
Vaccine (development, availability, safety)
Ventilators (availability, approved, impact on recovery, decision to use)
Virus family, definition, names, acronyms
Virus mutation, new strains
Virus survival / viability / persistence on surfaces, in air
Volunteering opportunities
WHO guidelines, standards, decisions
WHO’s position, opinion, response to
Working from home (guidelines, tips, advice)
Workplaces (preventing spread, rights, reopening criteria, guidance)

7 thoughts on “Mapping the ‘information’ genome for COVID-19

  1. frances

    ”A multidisciplinary, cross-national effort was set in train involving collaboration from health agencies and experts in Ireland, Norway, Canada, UK, Belgium and New Zealand. ” – Perhaps consider involving more emerging markets. Nothing from Africa or Asia here, where there is residual experience in pandemic response.

    Reply
    1. Gerry McGovern Post author

      You’re totally right, Frances, and I’d love to. These were the contacts I’d built up over the years, but I’d really love to see this expanded. I’ve seen your email and will contact you.

      Reply
  2. Andrew Ollivier

    Terrific Idea. I’m part of that demographic called white middle-class and accordingly see data and surveys as part of information. As Frances says there are other demographics and we need to make sure that we get out of our bubble – both for the information we present, and the channels we present it through.

    If you get enough responses, I’d suggest looking specifically for minority groups to see if you can spot any obvious statistically significant differences.

    Keep up the good work.

    Reply
    1. Gerry McGovern Post author

      Great point. It’s easy to focus on what you know and where you have most data. I’ve been in touch with Frances and am trying to get more data and insight. I did analysis across continents and found that the top tasks were basically the same in every continent.

      Reply
  3. Dave A Diack

    Hi, l have just attempted to respond to the survey containing your covid19 priorities on the NZ MoH website. On the very first page l was confronted with prioritising a list containing 75 options. I do not know if this is how you imagine the survey to be presented to a user but l’m afraid l just exclaimed to myself and closed the survey without making any attempt at it. Who on earth can scroll through that many options and remember what they thought was important? I’m sure you must know that the design of a survey is vital to getting responses required for good decision making. Enough said!

    Reply
    1. Gerry McGovern Post author

      Hi Dave,
      I can understand that your response. However, the survey works. Over 2,000 responded from New Zealand and over 20,000 have responded around the world. It’s deliberately designed to overload the senses so that the gut instinct kicks in. And the survey works. In the New Zealand version, the top 5 tasks got as much of the vote as the bottom 45. This gives us a clear prioritized list and will help us understand the information that is most important to people.

      Reply

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