Written Evidence Submitted by

Dr Jennifer Cole, Royal Holloway, University of London

(C190002)

 

 

Disclaimer/background:

 

I am submitting this evidence in a personal capacity, based on expertise gained across my career as:

 

[1] A policy researcher with the Royal United Services Institute for Defence and Security Studies (RUSI) where I headed the emergency preparedness and response programme – including planning for pandemics ­– from 2007-2017 and still hold a position as Associate Fellow. (https://rusi.org/people/cole)

 

[2] an academic researcher at Royal Holloway, University of London and Oxford University.

(https://pure.royalholloway.ac.uk/portal/en/persons/jennifer-cole(bfb50003-0f58-451a-a46b-5273796a2aa4).html)

(https://www.planetaryhealth.ox.ac.uk/secretariat/).

 

I am originally, and would consider myself primarily to be, a biological anthropologist, however my PhD is in computer science and much of my work has looked at the human-computer interface in information exchange. During my time at RUSI, I sat on the Cabinet Office’s Communicating in a Crisis Steering Committee Advisory Group, and authored a chapter on communicating in Emergencies for the NHS textbook on Health Emergency Preparedness and Response[i].

 

My research has focused on health behaviour, particularly in relation to information seeking and communication (from authorities to the public, and over peer-to-peer networks). My PhD covered health-seeking behaviour and information needs during the 2014-15 West Africa Ebola crisis; my PhD viva examiner was Dr Chloe Sellwood, the NHS Pandemic Flu Lead.

 

I feel I am therefore suitably qualified to provide evidence on the following three areas requested under the call:

 

5. Capturing during the crisis of data of the quantity and quality needed

 

6. The mechanisms for communication of scientific evidence internationally, within   governments and with the public,

 

7. The UK’s readiness for future outbreaks

 

I will address each of these in turn on the following pages

5. The capturing during the crisis of data of the quantity and quality needed to inform: 

i: decisions made during the crisis 

As the COVID19 crisis unfolds, the volume of data that will be generated will be immense, and the key challenge is not so much in capturing it as in aggregating, processing and analysing it. There is a huge opportunity to crowd-source data collection and aggregation in order to increase collection capacity, but this needs appropriate coordination and ownership.

As an example, a website started by a 17-year-old US high school student, www.ncov19.live, contains a highly detailed map - https://ncov2019.live/map - that is aggregated from a number of data sources, including a similar map maintained by the Dutch media agency BNO, but enhanced with granular information scraped from a number of international and local news agencies collected and added to the site by more than 40 volunteer coders around the world. This website provides information at a much more granular level than the one maintained by Johns Hopkins University (https://coronavirus.jhu.edu/map.html) and is updated constantly in real time.

Granular information on the whereabouts and details of local cases is one the key information requirements in PHEICs, identified from my work[ii],[iii] on health information exchange during the 2014-15 Ebola Crisis in West Africa. Crowd-sourced resources such as the ncov19.live platform provide ideal platforms to be adopted and supported by an official organisation such as WHO, CDC or the NHS, rather than such organisations needing to hold the capacity to create such resources themselves, but at present there is no mechanism to do this and (understandable) nervousness in trusting crowdsourced information and previously unknown coders.

A suggestion for future emergencies would be to have a known bank of registered and trusted volunteer coders and data collectors who could be called on when such needs were required. The challenge would be to keep them engaged in ‘down times’, but this could be achieved through the maintenance of a useful but non-essential website of some kind that could be suspended during times of greater need (for instance, perhaps a web platform recording biodiversity or wildlife; or collating public reports of minor vandalism or potholes). The creation of such a system in advance of an emergency would drive standardisation of data collection, storage, and processing that could aid aggregation in times of crisis.

A second issue here, which has to be raised, is the ridiculous siloing of NHS data with no single database retained across the whole of the NHS. The plans to do this in the middle of the previous decade, through the planned NHS data spine, were hijacked and derailed by a small minority of ‘privacy’ campaigners with a loud but unrepresentative voice, who have done untold damage to population health. The urgent need to aggregate and combine NHS data for the sake of saving vulnerable lives needs to be grasped now, while there will be an urgent enough need to likely drive public acceptance of such a move. In 2016, I was a signatory to the International Association of National Institutes of Public Health (IANPHI)[iv],[v] call for increased data sharing in the health field. This is the time to put the recommendations of that call into action.

 

ii to maximise the learnings afterwards; 

Further to the above, ensuring the coherent collection of key data through the standardisation of data collection, storage, processing, aggregation and analysis prior to times of crisis would ensure that data collected during an event is captured in a way that is most conducive to retrospective analysis afterwards. This could include a single data repository (I would suggest at ONS) for data that could be useful to researchers analysing the event in retrospect for the sake of identifying lessons from it.

 

6. The mechanisms for communication of scientific evidence internationally,

iii within national governments and with the public, including the handling of conflicting scientific opinions.

An excellent mechanism for collecting and communicating scientific evidence is the service maintained by the Science Media Centre (www.sciencemediacentre.org). Primarily a media outlet serving journalists, they aggregate the latest scientific information published on COVID-19, disseminate this to a team of expert scientists on their database, and gather in comments, critique and observations on this evidence. To some extent, this acts as an informal ‘Delphi Method’ (see https://www.rand.org/pubs/papers/P3558.html) that brings together several experts to address a topic which is outside the experience of any of them as an individual, but on which all are able to address part of the issue and to combine their partial expertise into a single response that would not have been possible from one expert alone.

This is a display of ‘Collective Intelligence’ and ‘The Wisdom of Crowds’ that is an essential component of information aggregation during times of uncertainty. It enables the best of many sub-optimal choices to be forefronted[vi] and provides agency to those faced with making difficult choices, as it allows trade-offs and compromises to be discussed and worked through during the decision-making process.

A similar service is provided by the discussion forum www.reddit.com/r/COVID19 on the aggregator platform reddit, where the latest academic papers on COVID-19 are posted for scientists (and laypeople) to discuss them. This forum is a particularly good mechanism for discussing unpublished preprints – of which there is an increasing amount during the early stages of an outbreak, as researchers rush to get early findings out for both the benefit of the academic community and for personal recognition – as poor quality research is immediately called out by the scientifically literate community.

The discussions can provide strong evidence and guidance for debunking misinformation resulting from traditional media coverage of such preprints, which often presents them as if they are peer-reviewed fact rather than speculative research that may be rejected by the academic and scientific community. For instance, a preprint that suggested SARS-CoV showed characteristics suggestive of bioengineering, posted on the preprint side www.bioRvix.com was quickly torn apart by the r/COVID19 community, and the reasons discussed were used to diffuse traditional media stories pointing to a bioweapon origin on the more news-focussed discussion site www.reddit.com/r/coronavirus

As interested laypeople, as well as qualified and professional scientists, are free to join in discussions on r/COVID19, the site can also be a good indicator of which elements of scientific papers the general public may struggle to understand, misunderstand, or need further clarification on. An example of this would be a misunderstanding between Case Fatality Rates (CFR)the number of people who are recorded as having a disease who die from it, which may only capture those cases serious enough to require hospitalisation and Infection Fatality Rate (IFR), the total number of people who contract a disease, even if they have very mild or sub-clinical symptoms. The CFR is often misinterpreted by journalists and the public as the percentage of people within a population who are expected to die, but this is not accurate: CFR figures often capture only the most serious cases. WHO announced the CRF rate for COVID-19 to be 3.4% in early March – a frighteningly high figure – whereas the high percentage of mild case means that the IFR is more likely to be around 0.2% and, as not all of the population are likely to become infected, the percentage of the population likely to die is lower than this again. Understanding how and why non-scientists – which includes media journalists as well as the public who read their articles – are likely to misunderstand science can help to ensure the authors of scientific papers provide plain language abstracts, or press releases, that pre-empt such problems. This is particularly at times when the media is more likely to be interested in their work than usual.

In terms of handling conflicting scientific information – both of the above mechanisms can identify where scientists from different fields may disagree, or approach an issue from different directions, and also allow them to work through those differences. The public is not incapable of understanding that information may not yet be 100% accurate, that the situation is ongoing and current estimates/understanding may need refining as the situation progresses. Equally, if there is no single answer, the reasons for the differences of opinions should be explained so that the public understands the process. I do believe that the Government is handling this well at present.

To give an example: I’m afraid I cannot remember the exact details, but during the Swine Flu epidemic there was a disagreement between two of the medical Colleges over whether or not pregnant women should be advised to have an influenza vaccination. The reason for the disagreement was that having the vaccination offered women and their unborn child some protection against Swine Flu, from which there was a small chance both might die if the mother contracted the virus but risked an equally small number of spontaneous miscarriages from reactions to the vaccine. There were therefore advantages and disadvantages to having the vaccination. At no point was this properly communicated to the public – though it would have perfectly reasonable to do so. The decision to vaccinate even though it risked miscarriage might be a very different decision for a mother of four pregnant with an unplanned fifth child, than for a 40-year-old pregnant with their first child following a third round of IVF. The latter may choose not to vaccinate (but to adopt stringent self-isolation or other social distancing measures), whereas the former may see the risk of miscarriage as a more acceptable risk than leaving four existing children without a mother. This choice was never put to mothers and resulted in an apparent squabble between the experts which diminished trust and confidence in the advice from either. Rather than being presented with two equally valid choices and being asked to make a decision based on personal circumstances, it seemed that  a one-size-fits-all choice had to be agreed upon. When the ideal choice is not entirely certain or requires trade-offs for which there are a range of costs and benefits, people need the agency to make their own decisions. 

Equally, during the current outbreak, there are different approaches to containment measures, lockdowns and quarantines in different countries. These are often based on local political ecologies, healthcare structures, general trust in government and authority, capacity to enforce such measures and societal norms around regulation and compliance. As the situation is unprecedented, no country can be sure that its approach is best or is better or worse than that taken by others. The best that can be done in this situation – which I do believe the government is currently doing very well – is explaining to the public how the decisions being made have been arrived at, what science has underpinned them, and why these decisions may change when new evidence becomes available. This enables changes in policy and government approach to be understood as an evolving process, not the correction of a previous mistake.

 

7. The UK’s readiness for future outbreaks, including a consideration of: 

iv: the National Risk Register

I personally thought it was the wrong decision to separate out the manmade threats (primarily terrorism, cyber security etc) from natural hazards (including pandemics) and that the first public iteration of the National Risk Register, in which they were included on a single matrix, was more appropriate.

I feel the decision to separate them was driven by the security sector, who were put out by the impact of threats on the UK population as a whole to be shown to be considerably less than hazards. This positioning should have driven security and resilience funding towards planning for and mitigating hazards such as flooding, pandemic preparedness and other natural events. The MoD stockpiles warehouses full of items that will never be used or which are used wastefully; the NHS far less so. The actual risk posed to the largest numbers of the population were initially, and should be again, mainstreamed within the National Risk Assessment process to properly reflect the actual likely impact on society. I would direct you to two papers I wrote whilst at RUSI in this regard:

Cole, J., 2010. Securing our future: Resilience in the twenty-first century. The RUSI Journal, 155(2), pp.46-51.[vii]

Zekulić, V., Godwin, C. and Cole, J., 2017. Reinvigorating Civil–Military Relationships in Building National Resilience. The RUSI Journal, 162(4), pp.30-38. [viii]

Far too much funding is directed towards ‘securitised’ responses rather than genuine preparedness.

 

v: the UK Pandemic Influenza Strategy

I have the utmost respect for the UK’s pandemic influenza strategy, the planning processes behind it and the work of Chloe Sellwood, the NHS Pandemic Flu Planning Lead in particular. The strategy is robust, well-evidenced and well-known within the health sector.

A strategy has to be able to be enacted, however, and I have been aware of deep and growing concern within the NHS over the past decade as budgets have been cut and spare capacity stripped away. The NHS only barely coped with Swine Flu and has been warning since that even a bad average flu season could push it beyond capacity. While no level of additional capacity may have been practical to have in place before COVID-19, the outbreak has nonetheless come at a terrible time for an over-stretched, under-funded health service in which staff morale is low.

The admirable response from the public, medical students and recently retired doctors and nurses shows, however, the high regard in which the ideal and institution of the NHS is held. Its slogan on start up – ‘From the Cradle to the Grave’ – has in recent years looked as though it might not last even one lifetime cohort. The first babies born into the NHS in 1948 are now in the high-risk group for COVID-19 but might find that the medical care they require is not available. This is tragic.

This does raise questions about how promises made by the healthcare sector can be delivered over lifetimes, and whether the structure of the NHS best serves the health of the population. For instance, has a focus on hospital-based treatment, predicated on drugs and surgery that ‘put right’ poor health, eaten away the pre-NHS system of family doctors, community nurses and midwives, who genuinely knew their patients, their needs and their struggles and looked after their health, not just their sickness? I would suggest that a move back towards more community-focussed health and social care, including for the elderly and infirm, may be required in the aftermath of this outbreak. The isolation and vulnerability of many people has been rudely highlighted. So too as the additional risk from comorbidities such as obesity, chronic lung disease and diabetes, all of which should be addressed in a stronger preventative public health programmes as we exit the current pandemic.

 

vi: PHE’s Global Health and Infectious Diseases Strategy. 

I have no specific comments to make regarding this other than those made above regarding stretched capacity for implementation of strategies. An interesting reflection on the short- and long-term impact of COVID19, including different CFRs of different countries and different economic impacts will be the link these have to healthcare systems availability, structure and universal accessibility. I doubt this will throw up anything unexpected but may once again highlight the fragility of healthcare systems in the Global South, the appalling commercialisation of healthcare in the US (where it seems that fear of being bankrupted by a two-week hospital stay is generating, for good reason, heightened fear compared with that seen in the UK) and the strength of the UKs NHS/PHE model. The latter has, thankfully, enabled a coherent response that has, it seems from the current shape of the UK’s epidemic curve, timed the staggered lockdowns extremely well.

(March 2020)

References:


[i] https://www.cabi.org/bookshop/book/9781780644554/

[ii] https://pure.royalholloway.ac.uk/portal/files/30776507/JBCEMEbolapaper.pdf

[iii] https://opendocs.ids.ac.uk/opendocs/handle/20.500.12413/15178

[iv] https://wwwnc.cdc.gov/eid/article/24/7/15-1830_article

[v] https://www.chathamhouse.org/sites/default/files/publications/research/2017-05-25-data-sharing-guide.pdf

[vi] https://ieeexplore.ieee.org/abstract/document/7503283

[vii] https://www.tandfonline.com/doi/abs/10.1080/03071847.2010.486551

[viii]https://www.tandfonline.com/doi/abs/10.1080/03071847.2017.1380376