Carlos Luis Sánchez Bocanegra, course instructor at the UOC Master's Degree in E-Health
An e-health specialist with a PhD in computer engineering from the University of Seville, Carlos Luis Sánchez Bocanegra heads the IT Department at the Territorial Delegation of the Government of Andalusia's Ministry of Agriculture, Livestock, Fisheries and Sustainable Development. He is also a course instructor at the Universitat Oberta de Catalunya (UOC) and the National Distance Education University (UNED).
Having accrued a wealth of experience in the field of e-health since the days of his doctoral thesis, which explored the use of artificial intelligence in health, Sánchez Bocanegra joined the UOC back in 2012 as one of the Master's Degree in Telemedicine's course instructors. He now teaches on two of the UOC's other programmes, the University Master's Degree in Data Science and the University Master's Degree in E-Health, although he has not limited himself to our University's classrooms. He has also worked with other universities in Latin America such as the Universidad de Antioquia (Colombia) or the Instituto Universitario Hospital Italiano (Argentina).
Sánchez Bocanegra had already written numerous articles on e-patients and using social media in the health sector, so, when the COVID-19 pandemic hit, it was only natural that he and an interdisciplinary team of health professionals created COVIDWiki. Although still in the testing phase, this online platform aims to serve as a living reference document that benefits public health. We spoke to him at the eHealth Center to better understand how this innovative proposal works and what he and his team imagine the portal will look like in the future.
Where did the idea to create COVIDWiki come from?
With the arrival of the new coronavirus, an unconceivable volume of data began to be generated among the scientific community, subject to countless modifications coming in quick succession. This infoxication has raised doubts about how we deal with patients affected by coronavirus, from detection through to treatment and recovery. What's more, the uncertainty surrounding how this virus is transmitted and should be contained has not helped matters. Healthcare professionals have been forced to move between trial and error, governed by protocols that are also subject to constant change.
The healthcare professionals that have been on the frontlines during this pandemic are the ones who have taken the brunt of this precarious situation when making decisions, such as during triage assessments dictated by a lack of suitable material resources in an already overloaded system.
In a context such as this one, the need to publish collaborative webpages, created and maintained by Spanish-speaking healthcare professionals, becomes abundantly clear, and that is exactly what COVIDWiki aims to provide. It wants to serve as a dynamic reference document that can be used as an up-to-the-minute compendium on the disease from a public health perspective.
What is COVIDWiki?
COVIDWiki has been designed to accompany those that care for our health. The idea behind the system is to select information, filter it and transform it into quality knowledge by following official documentation guidelines. It's based on a policy of joint decision-making responsibility in line with the guidelines issued by official organizations. The objective is to help professionals make decisions as well as offer support and information to citizens and patients. It's no secret that a well-informed population reacts better and adopts a more participative attitude, which is vital in keeping the pandemic under control.
How many people are involved in the project?
The project began as a final master's degree project written by Beatriz López for the UOC's University Master's Degree in Telemedicine based on her work in the Thoracic Pain Unit at Hospital Clínic in Barcelona. Clara Traverso, Ana Morote and Javier Escaño signed up to join the project later on.
We have been lucky to work with experts from different fields such as medicine, nursing, biology, psychology, information and communication technologies (ICT), engineering and teaching, and from different countries such as Denmark, Canada, Mexico, Colombia, Argentina, Peru and Spain. This link will take you to the "covidpedistas" list, which names everyone that has been taking part in the COVIDWiki project.
How do you organize yourselves to decide what kind of content to publish, who will write it or how it will be presented?
The characteristics of this pandemic and its rapid expansion have made organizing everything a challenge and have created a great deal of work, especially as we try to avoid duplicating our efforts. We organize our work using the online project management tool Trello, which helps us order tasks very quickly. But even so, we still find it difficult to get healthcare professionals involved in the process, as they're already so busy on the ground. Updating information from official healthcare bodies and organizations on a daily basis is also a very time-consuming task, as we're faced with a high volume of documents that have to be verified and analysed quickly without compromising quality, precision or rigour. This is precisely what makes generating content such a slow process, not to mention making it harder to keep everything up to date.
We still haven't found the right formula for motivating healthcare professionals to want to document their experience and knowledge about COVID-19 for the project. But it is essential they get involved, participate in the generation of knowledge and share information that will spread through society frequently and immediately thanks to tools such as COVIDWiki. As such, we are looking for a formula to motivate health professionals to participate in the project and help generate content. For now we're finding that very few of them want to invest what little spare time they have, but, as I've said, it's essential they get involved, generate knowledge and share information that will help feed COVIDWiki.
Who will receive this information and how?
To start with, the project is aimed at all healthcare staff, although it has been designed to reach the general public and patients, who are indispensable pieces of the puzzle when it comes to containing this pandemic, avoiding a second wave in the short term and creating a preventative culture should this coronavirus adopt a seasonal cycle.
What legacy do you hope the project will leave for the future?
We hope to record changes resulting from the different protocols, which will allow us to see what works and what doesn't as the pandemic progresses. We also want to mitigate the infodemic and highlight the efforts made by healthcare workers and their post-COVID lives, helping them to recover following such stressful circumstances. We also want to analyse the impact COVID-19 has had on different geographical areas.
At the same time, I would like to focus our efforts on improving the information coming from generalist fields such as epidemiology, and other more specific fields such as primary or emergency care. We also want to make it possible to view protocols from your phone and consult them more quickly to be able to apply them correctly. Finally, we would like for every "covidpedista" to feel rewarded for having contributed to this project, both during the pandemic and afterwards.
What role do big data play in gathering the kind of data you're looking for?
We've learned that we need to bypass big data and concentrate on smart data, because a greater volume of data doesn't equal greater knowledge. In fact, it incites greater uncertainty and confusion. There's a lot of disinformation swimming around within big data, which in our opinion is much more harmful than no information at all.
Our way of working with big data is based on the maxim "think globally and act locally". Therefore, we want to carefully select the right information from everything available out there in order to continually enrich COVIDWiki.
Although artificial intelligence does play a part in this project, it's so important that health professionals take the reins. We will need to reach out to those who are interested in the project and encourage them to take part. We understand that unless we expand our network of collaborators for creating content, the project's viability could be compromised.
What have you learned from COVIDWiki?
A lot. First of all, in terms of weaknesses, we've seen how difficult it is to get professionals to collaborate in uploading information to the website without receiving anything in exchange, and there's a lack of comprehensive and interdisciplinary investment in pandemic research, given that each professional focuses mainly on their area of work. We've had some trouble promoting COVIDWiki and have come up against linguistic barriers, because most of the sources are in English.
In terms of our strengths, we could say that the project has made it possible to filter, generate and assess knowledge, and has allowed us to build a team project that involves healthcare professionals. We've also strengthened synergies and the information we've gathered can be used by all healthcare professionals immediately and from anywhere in the world. COVIDWiki has also helped us realize that community-based collaboration can improve and help tailor information and knowledge.
Last, but certainly not least, we have also been able to detect certain dangers, including the risk of information becoming outdated or incomplete due to a lack of resources. There is also user illiteracy; there may be those who perhaps do not know how to use the tool to find what they need.