Before, beside and beyond (part 1)

When we look at involving people with all that non/pre-clinical, lab-based, biomedical, methodological research it is worth considering that this is simply the study of health that happens before, beside and beyond patient/carer experience.

So, what does Patient, Public Involvement look like with this research landscape?

Yet, it precisely because of patient/carer need and patient experience that it is funded so it is in our interest to be involved. It is a landscape where patient, public involvement is increasingly taking place and the workshop where I presented these thoughts helped drive these posts.

This post is based on a Workshop Presentation for the Health Research Charities Ireland (HRCI) – Shared Learning Group on 23rd February 2022. Please check out Twitter for the Tweetchat using hashtag #Involvement_Preclinical

 A Necessary Connect

Sir Paul Nurse – Director of The Francis Crick Institute

The connection between pre-clinical, lab-based research with patient need is of growing importance and value. It has become evident throughout the Covid-19 pandemic that this is a necessary connection that is also required across other health issues to help make greater meaning. 

Informing, engaging and actively involving patients and the public is a means of connection – making these bonds real, tangible and practically valuable for biomedical research. Active involvement, where genuine partnerships are created and developed, has the additional potential to increase understanding amongst patients and the public in science, engender trust in evidence and challenge fake news at a time of such rapid communication through digital technology. 

This is fundamentally about our science, our clinical care and the concept of public good being research that is relevant, meaningful and applicable for people in today’s world. It is learning about the developments and changes in science, data and IT. The more open and transparent research becomes the greater the potential for improving health.

It should be by necessity a joint endeavour and an opportunity for mutual learning. It should not just be about going through the motions of engagement and involvement. It is about having clarity of purpose and meaning to improve this research.

Patient and public involvement and engagement (PPIE) has the means of increasing and strengthening that connection with basic science as well as the reciprocal development of a greater understanding of biomedical research. It is in all our interests. 

POINTS OF VIEW

As I begin to unpick the features and benefits of patient and public involvement in pre-clinical and lab-based research, it is worth pausing to reflect upon the world of clinical research

Clinical Research is closely related to our health experiences. It allows us to find ways in which we, as patient advocates, might compare, contrast and use our personal encounters to assist the research teams. We draw upon our direct knowledge to understand, reflect and strengthen those connections spoken about by the Paul Nurse, the Nobel Prize winner. 

If we took pictures of Clinical Research on our smartphones…. it is likely to be a series of portrait photos showing the participant and research nurse interactions – explaining the study, asking questions about what is required, signing the consent form, taking part in the trial, sending and the participants receiving the results.

These portrait photos have an individual quality with a distinctive and particular style and form. There is a unique agreement and commitment. It is the willingness, the volunteering and the altruism of trial participation. It is for the most part the researchers involved with people in clinics and healthcare settings. It has a personal feel.

In comparison, the lab-based experience invites us to consider photography with a narrower focus and a broader more general appeal – we are altering both the lens and the perspective. It becomes more indirect and may feel initially less personal.

CHANGING LENS & PERSPECTIVE

The LENS of non-clinical research becomes adjusted to the close up – the microscopic or even molecular – (looking at human tissue, chemical formula, Petrie dishes). Or we are looking at research data in minute detail.

The PERSPECTIVE turns the camera around to landscape mode – to a wider panorama (lookinga disease, a condition or a population – (about chemistry, physics, bioengineering, etc). 

In terms of Covid it means looking at the complicated patient experiences alongside the complexity of the science and the elaborate development surrounding vaccines and medicines. It is bridging these connections that helps us all understand. 

You may like to consider whether this analogy of photography and cameras help us all to be clearer? Does it help to make a mental picture and connection to enable us, as patients and members of the public to navigate our way? Might it help lab- based researchers find a way of differentiating between their work and clinical researchers? If you don’t use photography as the metaphor, what else might you use?

Involvement with pre-clinical research is another step in learning rather than necessarily being some different type of involvement. 

Biomedical research is an interesting place to be for patients and the public as it develops our understanding of scientific research. Equally, our contributions can also help give purpose and reason for those working in this research.

So, what is actually different about involving patients and the public in the landscape of before, beside and beyond patient experience? Click here to read Part 2

You might also be interested in this updated post listing some of the examples of involvement in this landscape https://involveddotblog.wordpress.com/2022/01/18/involving-patients-and-public-with-health-research-in-labs-science-numbers-and-methods/(opens in a new tab)

An introductory blog post can also be found on the HRCI website: https://hrci.ie/guest-blog/

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