COVID-19: Patient & Stakeholder Engagement resources

We provide information on studies and initiatives that deal with COVID-19 and Patient & Stakeholder Engagement. In addition, we show opportunities how Patient & Stakeholder Engagement can be realized in the current situation. We continuously update the content on this page. You can send us additions and feedback at any time.  

COVID-19 studies and initiatives including Patient & Stakeholder Engagement

The COMET („Core Outcome Measures in Effectiveness Trials“) initiative coordinates the development of "Core Outcome Sets" (COS) for clinical trials worldwide. The aim is to determine an agreed standardised set of outcomes that should be measured and reported, as a minimum, in all clinical trials in specific areas of health or health care. There are already some COS initiatives and first results for COVID-19. The project "COVID-19 COS" includes the opinions of patients, caregivers, community members, and medical personnel. A project description can be found on the pages of COMET as well as on the COVID-19-COS homepage. Members of the public were invited to participate in the first round of the development process. By the deadline, 590 persons with confirmed/suspected COVID-19, 186 family members, 3,631 community members, and 4,882 health professionals took part in the survey. Anyone who is interested in being contacted about future opportunities can contact the initiative. Current information is also available on Twitter.

Cochrane has created the TaskExchange platform that connects people needing help with their systematic review with people who have the time and skills to help. The tasks vary in difficulty and the levels of knowledge required. More information can be found here and this link leads directly to the COVID-19 topic area on TaskExchange. Cochrane also initiated “Cochrane Crowd”, where people can perform screening tasks to support research.

In addition, Cochrane currently recruits consumers to be a part of a COVID-19 “consumer rapid response group” which will participate in working on rapid reviews of evidence. They are particularly looking for people who are affected by COVID-19, e.g. persons who are ill or have recovered from COVID-19 and/or their family members, or who is at high risk of COVID-19 infection. More information is available here.

Online tools for remote Patient & Stakeholder Engagement

To further mitigate the COVID-19 pandemic, face-to-face formats of Patient & Stakeholder Engagement cannot be implemented at the moment – or only to a very limited extent. However, events or meetings can also take place online. There are a number of tools available that also enable interaction between participants:

The Hochschulforum Digitalisierung has put together a collection of tools (in German) for holding meetings, conferences or lectures online. Under the heading "Tools für mehr Interaktion" you can find software that allows interactions between participants. The collection is being expanded continuously. If you want to divide a group into smaller teams or simulate coffee breaks, you can for example use the tool Yotribe.

Various resources from INVOLVE show how Patient & Stakeholder Engagement can work during the pandemic: Step-by-step instructions explain how to work with Microsoft Teams or Zoom for virtual meetings with patient representatives. The NIHR provides information on virtual meetings, and resources for Patient & Public Involvement during the pandemic here (including a link to the 2020 published "Map of resources for co-producing research in health and social care", which also contains a chapter on co-production during the COVID 19 pandemic) and here.

The National Co-ordinating Centre for Public Engagement provides resources for online engagement and compares the pros and cons of different tools in this document.

More resources on COVID-19 from patient organisations and other stakeholders

The International Collaboration for Participatory Health Research (ICPHR) wants to publicise participatory health research studies on COVID-19. Here is the link to the call.

The European Patients' Forum (EPF), an umbrella organisation of patient organisations in Europe, has compiled resources on COVID-19 on its website. There you will also find experiences from patients with chronic diseases in the current situation. The EFP continues to call for opinions and experiences on the topic which can be submitted by e-mail. Especially for cancer patients, there is information on COVID-19 collected by the Workgroup of European Cancer Patient Advocacy Networks (WECAN).

Citizen Science and other opportunities to engage in COVID-19 research

The EU-Citizen.Science project collects initiatives on its website, where citizens can support or participate in research on COVID-19. The Citizen Science Association has also put a collection online.

For German-speakers, there is a compilation from Bürger schaffen Wissen on the page "Mitforschen für Corona", and Schweiz forscht provides information here.

The Robert Koch Institute has published the “Corona-Datenspende App” for people living in Germany, which is designed to detect regional outbreaks of COVID-19 more quickly. People who use a smartwatch or a fitness bracelet can download the app and make their pseudonymised vital data available to researchers. More information can be found here (in German).

In addition, there are many studies on the impact of the pandemic and the nationwide preventive measures to mitigate SARS-CoV-2 infections. These are not studies actively involving patients, but they give the public the opportunity to tell the scientific community the impact of the pandemic on their personal lives and experiences. Therefore, in this particular situation, we would like to draw your attention to some of these studies:

The Joint Research Centre of the European Commission has launched a survey on the impact of the Corona pandemic: EU citizens are invited to provide information on the impact of the crisis on their individual living conditions. The survey is available in several languages, including German and English. On the website of the European Commission you can find more information on research and innovation on COVID-19, including studies on the psychological and socio-economic effects of the pandemic.

In more than 100 countries, the COH-FIT study ("Collaborative Outcomes study on Health and Functioning during Infection Times") examines the short and long-term physical and psychological effects of the COVID-19 pandemic. Led by Prof. Dr. Christoph Correll, Charité – Universitätsmedizin Berlin, and Dr. Marco Solmi, University of Padua (Italy), more than 200 scientists from over 40 countries are involved in the project. You can participate here.