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What If No One Wanted To Hear Your Voice? Moving beyond tokenism

What’s the biggest lesson you have learnt from the global pandemic? Here are a few suggestions:

  • Working from home isn’t that bad after all?
  • You crave more human interaction than you realised — even being in the office with colleagues who can drive you up the wall?
  • Long commutes suck, and you haven’t missed early starts on a railway platform?
  • Do we need to be better prepared to respond to similar events in the future?
  • Your broadband is rubbish and can’t cope with multiple video meetings?

Any of these resonate with you? They would all be on my list, but not at the top. There’s another that takes that prize — how essential science and research are to humanity.

I realise that sounds rather obvious, otherwise, how would we have put a man on the moon (assuming you believe NASA did!), created the worldwide web, or discovered electricity?

Add to this, in my “day job” I work for a large funder of health research, so know the value of what we do as an organisation. But the pandemic put a new shine on why it’s so important, and that I play a small part in a national organisation making a global impact.

A twin career path

By background, I trained as a journalist before getting into wider public sector communications and marketing. While not to decry anyone working for a private company, the public sector ethos sits more comfortably with my values and outlook.

I won’t name my employer — although if you fancy being Sherlock Holmes, I imagine you can put the pieces together — but we fund research for the UK’s National Health Service, including public health and social care, as well as recruiting patients into these studies and developing the research careers of new and established clinicians and academics.

That is worthy enough as the role of my employer, I would suggest, but the COVID-19 pandemic brought home to me just why I am proud to be part of this organisation (and no, I’m not getting a bonus for writing this— it is public sector remember!).

Throughout this part of my career, stretching back 15 years since the creation of the organisation, corporate communications has always been part of my role, but alongside this, I have been fortunate enough to have responsibilities across many other areas of research management.

For someone who is neither an academic nor a healthcare professional, the chance to learn and work in such varied areas has kept my work fresh and interesting. The mantra “no day is ever the same” has always rung true for me. So, when the chance to take over responsibility for “patient and public involvement” came my way, I was up for the challenge of trying something new. Little did I realise this would end up being the most fulfilling part of my role.

Why do we always need the patient’s voice and involvement

So what is public involvement in research and why should you care this takes place and is an essential part of the assessment of healthcare treatments before they become available to you or me?

Public involvement in research ensures research is being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.

You might think this seems an obvious approach — you wouldn’t put a new recipe on your menu without doing a bit of road-testing first. Yet, the active involvement of patients or members of the public in identifying what health research should take place, how to conduct a research study, considering whether approaches will be acceptable to patient groups, and being part of decision-making processes around where research funds go, has only got traction in the UK in the last 25–30 years. In many other countries, it is still struggling to be part of health research at all.

Despite one of the first accepted clinical trials taking place in 1747 by Dr. James Lind, who undertook an experiment to test the use of citrus fruits to treat scurvy, the notion of “public involvement” in the shaping of research did not follow hand-in-hand.

A 1969 scientific paper by Sherry Arnstein described a “Ladder of Citizen Participation” to explain the history and challenges of how decision-making was excluding “citizens” in activities affecting them and the steps needed to move to a point where citizens had control and influence.

A personal relevance

When I came into the “public involvement” part of my role in 2014, the organisation was already on this path with a firm commitment that patients and members of the public were at the heart of our research.

But this has taken a more personal relevance for me the longer I’ve been leading a team charged with ensuring we seek, hear, value and incorporate the patient voice into the research we fund.

My wife and I have both had bouts of poor mental health and our children both have Autistic Spectrum Disorder (ASD) diagnoses with associated conditions. Autism is not something to be feared or to be sympathised about, they have extraordinary talents and perspectives that make them who they are. The challenge is we live in a world designed for “neurotypical” people and not those with autism. Research in this area helps us to understand the different ways those with ASD experience the world, what their needs are and how they can flourish. I see at first hand how advances in our understanding — through research — allows this.

But don’t forget, these insights and developments are not just down to clever academics and clinicians. Research also relies on having the “patient voice” and perspective at the heart of the mix.

To be in a position where I have the good fortune to interact and engage with patients or carers who can advise us that a proposed approach has the potential to exclude members of society, and then how we can remedy this, remains a prime motivation in the job I do.

There is a “joke” that goes around the research community that it’s always the “usual suspects” of patients and public members who end up on advisory groups or committees. That is:

  • White
  • Middle class
  • Of, or approaching, retirement age

There is a lot of truth in this, although it is not entirely true, and I never underestimate the incredible value this demographic provides to our research — they are patients themselves, and whose views are as valid as anyone else’s.

But being in this role has highlighted, and allowed me to be part of the movement trying to address the general lack of diversity within health research — whether that’s within research teams, advisory committees, or public members from diverse backgrounds.

Ethnic minorities, disabled groups, those from challenging socio-economic backgrounds, young people, religious groups, and the LGBTQIA+ communities need their voices heard and part of the research agenda too. I am involved with several projects looking at how we make this a sustainable reality, and that we move beyond the “tokenistic” representative who ticks a box on the list of protected characteristics in the 2010 Equality Act.

Don’t get me wrong, this is a difficult area. There is a lot of historical suspicion and lack of trust in certain communities because of past treatment from other parts of society that act as barriers — just think about the Windrush scandal as one example. But my job has put me in the very fortunate position to change this and hear the perspectives, concerns and needs of a far wider range of people than I would ever be able to.

Every one of these different communities has a perspective and needs that are as important as those of my autistic sons. If we don’t take the time to hear them, to listen, to value and make them part of the conversation, then we are still on the bottom rungs of Arnstein’s Ladder.

If you want a more pertinent example of how the public has and needs to shape research, the organisation I work for has been at the forefront of COVID-19 vaccine research and is now moving into areas such as understanding how to treat “Long-COVID”. This research cannot take place without public involvement to shape this work or the participation of patients in the studies themselves.

Remember, you would not have had your COVID-19 vaccine without patients and members of the public being involved with research studies that tested them first.

If for no other reason, playing a part in such an endeavour still gets me up in the morning and motivated to make sure the patient voice remains heard.

[Photo by Jackson Simmer on Unsplash]

Recommend0 Simily SnapsPublished in All Stories, Culture and Current Events, Opinion Piece

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