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. Some COS initiatives and results for COVID-19 are available. The project "COVID-19 COS" included 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. Results of the initiative are presented here and 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. You can find an overview of the Cochrane COVID-19 resources here.
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 Wonder.
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.