Before, beside and beyond – (part 2)

This post is based on a Workshop Presentation for the Health Research Charities Ireland (HRCI) – Shared Learning Group on 23rd February 2022. Please look out for the Tweetchat on 9th March 1900-200hrs (GMT). The before, beside and beyond refers to that health research that happens in labs, through molecular microscopes, on computers with pre or non-clinical studies.

Patient, public involvement (PPI) with this landscapes requires a little more thought and preparation. Many aspects are familiar yet others present some challenges

Some SIMILARITIES and CHALLENGES for involving patients and/or the public

Patient, public involvement with pre/non-clinical research still means meeting researchers, taking part in discussions, reading papers, emails and commenting on proposals but it is less about our personal experience. It is like taking a side step.

Involvement is still about providing a public and/or patient perspective, offering opinions on relevance, advising on and suggesting clearer language and bringing a reality check. This then becomes more about helping people understand their role and comprehend how they can contribute.

The challenges, of course, are that it can be more complex, complicated and involving a very detailed nature of research so how do we help people join in? 

It may feel as if there is less to contribute so how might we giving confidence?

Greater time may be required to tune-in, absorb what is required of the involvement so what support should we offerThe longer timescale often means less frequent meetings so what can we do to keep-in-touch?

However, the opportunity to learn about research is immense. Through my own involvement in meetings such as these, I ask better questions.

SETTING the SCENE, the TASK and the ASK

It appears that we might like to consider that it is the context, content and conduct of non-clinical research that separates it from involvement with clinical research.

Setting the Scene (context) – the settings and surroundings of non-clinical research are often quite different from the familiar clinical settings of most people. The places and the work researchers do are often separate from the standard patient pathways. They may have little or no actual contact with patients.

Yet, the work being done and where it takes places can be aspects of curiosity. Harvey’s Gang began because a young boy asked what happened to the blood sample they took. 

These can be of great interest and revelation to the public whilst also appearing slightly foreboding. 

I was rather disappointed to discover that the heralded process of ‘study randomisation’ was in reality two people entering data on a computer. They were very pleasant and the computers were great but I was hoping for a lottery tumbler. 

It may be difficult with public involvement to actually visit the laboratory, the computer suites and/or the tissue banks. There may even be closed laboratories yet it is possible to take pictures or a short film clip. Meeting may take place in a University setting rather than the NHS.

Scientific researchers might like to consider looking out for any You Tube clips, animations or presentations by themselves or colleagues that might help explain what they do.

Public partners might like to consider can think of groups, online communities that might welcome a talk, a tour and presentation.

Describing the Task (content) – The research may be more scientific, going into the detail of medicine development or tissue sampling, so the content might be quite complicated. It is, however, important to remember that public involvement is not about fully knowing the science but to encourage greater relevance, clearer language and better understanding.

Non-clinical researchers might like to give thought to examples and metaphors. It is helpful to be clear about the purpose – grounding in reality – a series of chats and conversations about your work.

Public partners might consider examples from their life experiences that explain the science. They may make useful suggestions to the language in lay summaries and other information about the research.

What is the Ask? (conduct) – This is about the actual what, when, where and how the involvement gets done. 

It needs some basic information about the study which is not just the protocolThe way we may be more spread out, have numerous failures, take time; quite specific and less formal meetings; worse things happened on the floor of the steel works in Sheffield – Karen Wilman

It may just start with a simple conversation, with a catch up in three months time, with an email update (even when little or nothing has developed). 

The catch up can be a chance to think about what you have learned from meeting each other and whether or how you have used that knowledge. It might even just be about how you have managed during Covid. 

Put a note in your diaries for a time ahead to contact each other for a further catch up; add reminders on certain dates – annual get together on date submission of funding application, etc.

Question for Workshop: Think about these in terms of a Rough Guide to a City or Country. What might you need to include in yours?

PEOPLE AND PLACES TO SEE

I have chowen a few examples that illustrate a range of involvement happening before, beside and beyond patient experience.

Dr Emma Dorris, emphasises the contribution involvement makes to Quality & Clarity, Needs and Value

https://sciencetrends.com/bridging-the-gap-between-research-and-impact-public-and-patient-involvement-in-health-research/

Parkinson’s UK, Alzheimer’s Society and University College London Biomedical Research Centre have produced ‘A Practical Guide to Patient and Public Involvement in lab-based research’ – mentions that involvement provides reassurance and motivation to continue, help to think differently and to raise new questions

https://sites.google.com/parkinsons.org.uk/ppi-in-lab-based-research

Bella Starling and Jemma Tanswell look at social change and innovative ways re-imaginging the positive assets that diverse young people bring to science and health research

https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-018-0122-2

Consumer buddies in Australia provide insight into how their research can make a difference in the community

https://www.wehi.edu.au/research-research-fields/clinical-translation/consumers-and-research

Alice Biggane, et al talks about Involvement being key to research Integrity, Value and Quality in her paper about Methodological Research

Lynn Laidlaw, Irene Soulsby, Bea Goulão and myself – Figuring it Out blog post talks about involvement grounding statistical research in reality, helping it to make sense and motivating the work

Luca Marciani Involving children and young people in research from inception of a novel medical device to a multi -centre trial – showed the development of a mutually beneficial partnership, enabling genuine knowledge exchange

What might public good look like for the best research?

As we read through these papers and others, it is possible to identify certain themes that are inherent in why we need to involve patients and the public in this research landscape. Here are some themes that I have noticed…

  • Integrity & Trust – for high quality scientific research 
  • Quality & Clarity – in the language and communication of proposals 
  • Needs & Value – in terms of relevance and appropriateness of the research 
  • Grounding research – in reality and patient experience
  • Affirmation & Reassurance – that it is the ‘right’ thing to be doing
  • Encouragement & Motivation – for researchers to carry on
  • Learning & Development – about research for public partners
  • Different thinking – fresh ideas and new questions

WHERE MIGHT YOU BEGIN

Some suggestions for researchers

  • Perhaps start with a couple of people who are curious, interested and willing to help
  • Seek out some others who might like to get involved and invite them to meet for a chat about your area of research
  • Reflect on learning and look at ways of communicating with wider networks
  • Identify specific things that might/would benefit from patient experience, the patient/public voice and their presence 
  • Ask yourselves what you might do next and how you be even more open, to engage and involve the public

The Challenge is to find ways of bringing more people in whilst extending the breadth and depth of the discussions. The danger is a few people assimilate and exclude others.

One Comment

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s