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Radical collaboration, common sense & a focus on inequality: McPin’s response to the Covid mental health roadmap

Thomas Kabir, Vanessa Pinfold, Jessica Bond and Dan Robotham 

Today, the Lancet Psychiatry published a “roadmap for research” on Covid-19 and its impact on mental health, co-authored by 24 people and coordinated by the Academy of Medical Sciences and the charity, MQ. Thomas Kabir, Head of Public Involvement in Research at McPin, was one of three authors contributing a lived experience perspective. The headline recommendations include the need for real-time monitoring of mental health on a scale never before seen, the creation of a neuropsychological database of Covid-19, the design of apps and digital programmes, and research to understand what makes people resilient in the face of this crisis. There is also a focus on understanding the effect of the coronavirus on the brain and nervous system, and suggestions for how to do this using biobanking (storing tissue, blood, or genetic material), and by using patient data. The team’s expertise spans bio-psycho-social interests and there is a strong emphasis on the need for multi-disciplinary research approaches.

The paper is a rapid response to an unfolding, unprecedented situation and was the result of discussions among the authors about where research priorities should lie, informed by public surveys conducted by Ipsos Mori and MQ, just after lockdown began. As we have written elsewhere, the whole population now has lived experience of Covid-19. The stress will affect people in different ways and to different intensities depending on individual and socioeconomic situations. But there is no doubt that as a society, we are already facing a crisis that is causing huge psychological distress, and will continue to do so long after the pandemic is brought under control. This is extremely worrying when you consider how ill-equipped we were to deal with rising rates of mental health problems before the word Covid-19 was seared into public consciousness. 

Given this urgency, we welcome the publication of the Lancet roadmap. We clearly need high quality research to help address the massive mental health impacts of the Covid-19 pandemic. Understanding the role of research in addressing the mental health impact of Covid-19 needs careful consideration. Thus, the roadmap is a rapid response that needs rapid scrutiny. With this mind, we offer the following thoughts.

A call for radical collaboration. The paper is a call to arms for the mental health science community to present a united front, as opposed to “the current uncoordinated approach with a plethora of underpowered studies and surveys”. We welcome this sentiment and the acknowledgement of the role that lived experience expertise has to bring, but we would like to see this sense of collaboration extended to the whole research community. Now is the time for mental health researchers to make friends with our colleagues in emergency medicine, in public health, and those working in social care (to name just a few). Never has it been so clear how interconnected physical and mental health are. Why not create an open-access Covid-19 mental and physical health research database rather than just a neuropsychological one? Instead of designing studies from scratch, why not see what coronavirus research has already been submitted or approved and see if it is possible to nest a mental health component within that? We also need to avoid the temptation to make an unrestrained ‘grab’ for patient data without proper consent and to be efficient wherever we can. 

High ethical standards – no exceptions. The paper calls for the large scale monitoring of anxiety, depression, self-harm, suicide, and other mental health issues, drawing on existing cohorts and the creation of new ones. We appreciate the need to collect systematic, quality data but we must also think about what this real-time monitoring would actually look like and the burden it may place on people. We are told to embrace techniques that can “assess moment to moment changes in psychological risk factors”. How can we collect these data without reminding people at multiple points throughout the day that their mental health might be fragile right now? Will repeatedly questioning how anxious we are lead to more anxiety? How would this work for frontline workers? Do we have co-produced, reliable tools that we know are acceptable to the public? What’s more, this focus on symptoms risks overly medicalising understandable psychological distress. So alongside any monitoring, non-medicalised support needs to be available, including that rooted in communities, self-help and mutual aid. 

Appropriate use of people’s data. Once collected, who would own and control these data – our data? Now more than ever people’s data need to be collected and guarded under strict conditions. As well as mental health monitoring, there is much talk of using apps to track if you have symptoms, or if you are near an infected person. The benefits are fairly obvious. But there is every danger that these apps and the data that they access can be misused by commercial companies, the government, or even researchers under the cover of being necessary to ‘fight the virus’.  Fundamentally, we need to make sure that people have control over their own data, and that there is proactive agreement for data to be collected in the first place. People’s rights should never be buried in hundreds of pages of terms and conditions as they commonly are now when signing up to apps. 

A common sense approach. McPin is a specialist mental health research charity committed to improving the quality of research. However, it is clear to us that the answer to many of the problems raised currently about the nation’s mental health do not need more research. They need the application of what we know already. This is a huge opportunity for public health to increase public mental health awareness. Starting with the Five Ways to Wellbeing, developed by the New Economics Foundation way back in 2008. The whole country, indeed the world, is living with the mental health consequences of social distancing, self-isolation, furloughed jobs and financial instability, a rise in domestic violence and fears around family and friends’ health. We need to adopt self-care strategies related to good sleep, exercise and nutrition routines, and the government needs to adopt policies that support social cohesion. We need to adapt current treatments and support and make them more widely available so people in need can receive mental health care now. There are huge concerns that people in psychiatric hospitals are being forgotten and that suicide rates will rise across the community. The response to Covid-19 is more about politics and policy than it is to do with funding more academic research. 

Existing inequalities writ large. The platitude that we are all equally in this together has been debunked many times in the last week. We now have the data to show that non-white people are disproportionately effected by Covid. The paper talks about vulnerable groups and is to be commended for acknowledging groups that are often overlooked such as the homeless and incarcerated, but one notable absence is the impact on BAME communities. Mental health research too often fails to recruit diverse samples, or consider the specific needs of people from within and across different BAME communities when developing new treatments and support systems.  

Covid-19 is exacerbating existing inequalities. We need research to identify the particular mechanisms behind this, including any impact of past government policies that have hit some groups harder than others and may have increased vulnerability. This will be particularly important when it comes to the economic aftermath of the pandemic. While it would be great to think that the social security package created in response, plus the heightened awareness of the need for community connection that many are feeling (you only appreciate something when its gone), will usher in an era of greater public spending, including on grassroots and community initiatives that could really change society for the better, this is wishful thinking. The reality of a second bout of austerity is surely what faces us after we’ve faced down this crisis. We need research that will make the case for investment in the nation’s wellbeing and scaled-up mental health support everywhere – the home, workplaces, community, schools, hospitals, and prisons, but also investment to address the root causes of a lot of psychological distress, poverty, social deprivation, inequality.   

So what next?

A rapid response is needed to Covid-19 but so is the acceptance that we need to understand this crisis properly, and that will take time. New information is coming in all the time, not just from the real world experiments (both scientific and social) that are happening everywhere, but in the stories of those affected. We need to take advantage of this newfound appreciation for community cohesion, hastened by our collective realisation of society’s fragility. We need to work with the people who are more affected, and ensure they don’t get even more left behind in the new world which appears.

History says this can go one of two ways. After World War Two, we ended up with the NHS. But there are plenty of examples of global catastrophes plunging society to new depths (the Great Depression springs to mind). The only way around this is to listen to people and hear what they are saying. Not just to those who shout the loudest. At McPin, we are already working with people, trying to find out how people are disempowered (or empowered) by this pandemic in unexpected ways. We urge others to do the same. Research will be better for it.