Redefining Research for a Global Community

Over the course of the COVID-19 pandemic, we have witnessed a paradigm shift in almost all aspects of society, such as in our healthcare systems which have made huge adjustments to manage an unprecedented patient volume during the height of the pandemic, while also adapting their approach to accommodate outpatient appointments remotely via telemedicine. Additionally, the way in which research and clinical trials are being conducted globally has also been transformed and while this has largely come in the midst of adversity, the formation of global partnerships as seen to tackle this pandemic would also significantly benefit researchers, stakeholders and patient advocacy groups in other disease specialties and patient communities.

While many governments have been closing their borders to prevent the virus from entering, scientists and researchers have been tearing down theirs in search of a vaccine. In this way, individual recognition and credit has been put to the side and according to Dr. Ryan Carroll, a Harvard Medical professor, “the ability to work collaboratively, setting aside your personal academic progress, is occurring right now because it’s a matter of survival”¹. To support the cause, more than 30 leading journals and publishers have also committed to making all Coronavirus-related publications accessible on public repositories².

However, this level of inter-organisational collaboration is not the case in all disease specialties. A survey conducted by Wellcome Trust which included the experiences of more than 4000 global researchers to better understand research culture outlines that while 84% are proud to work in the research community, 43% believe that their workplace gives more merit to specific metrics, some of which can help with acquiring future grants and funding, than to research quality³.

While Dr. Carroll’s sentiment is very refreshing and offers a new sense of hope in defeating the deadly virus, it should not take a pandemic to remind us that public health is, and always will be the priority. To make significant advances in the search for treatments and cures for diseases, including common, rare and genetically-inherited retinal dystrophies, it is imperative that we recognise patients as the central focus of our work, and view the conditions we strive to treat through a global lens. In this light, we can have a beneficial impact on people’s quality of life worldwide, instead of just the quality of our lab reports.

VOZ Advisors; a leading consultant to global pharmaceutical and biotech companies which supports and facilitates the inclusion of the patient perspective in all aspects of drug discovery, development and commercialisation have also published the results of their survey, conducted to better understand the breadth and impact of the COVID-19 pandemic on Patient Advocacy Groups (PAG’s) across the European Union and United States⁴.

Of the 55 PAG’s that responded to the surveys from both regions (22 US PAG’s and 33 EU PAG’s), the indirect effects of COVID-19 on people living with unrelated health concerns, as well as on the availability of funding to sustain the organisation and cover the cost of organised initiatives were the primary areas of concern for PAG’s in the USA and EU. Additionally, 62% of participants reported a significant need for information about COVID-19 and its impact on specific communities with respect to clinical trial activity, access to and supply of essential therapies, while many EU PAG’s also remarked that “while we are all focused on COVID-19, we cannot/must not slow progress to develop lifesaving therapies^”4.

This call for universal access to and sharing of data and knowledge to progress research cannot be ignored, and the sooner that we tackle diseases with a united front, the better!

References:

1. New York Times. Covid-19 Changed How the World Does Science, Together. Available at https://www.nytimes.com/2020/04/01/world/europe/coronavirus-science-research-cooperation.html. Accessed July 2020.
2. Wellcome Trust. Publishers make coronavirus (COVID-19) content freely available and reusable. Available at https://wellcome.ac.uk/press-release/publishers-make-coronavirus-covid-19-content-freely-available-and-reusable. Accessed July 2020.
3. Wellcome Trust. What researchers think about the culture they work in. Available at https://wellcome.ac.uk/reports/what-researchers-think-about-research-culture. Accessed July 2020.

VOZ Advisors. A Survey of the Impact of the COVID-19 Pandemic on Patient Advocacy Groups Across the US and EU June 2020. Available at https://vozadvisors.com/wp-content/uploads/2019/11/COVID-19-Report-Summary-6.9.20-FINAL.pdf. Accessed July 2020.