FIGURING IT OUT

Reflections on Patient/Public Involvement with Numbers, Statistics and Data

Derek C StewartLynn LaidlawIrene Soulsby and Beatriz Goulão

The following notes were initially written in preparation for a meeting about Patient, Public Involvement with Numbers, Statistics and Data run by Beatriz Goulão in December 2020. Since then, it has developed into this article with contributions from the public partner participants and Bea.

It seems to us that that the active involvement of patients and the public with data, statistics and numbers is more than just possible – it adds up! The features and benefits we have categorised were identified from the various tasks we were being invited to consider. It was then possible to comment on how this might have value.

It actually appears more about what we, as patients/public, know already rather than needing to understand and immerse ourselves in numbers and/or statistics! 

It is an opportunity to learn about how statistics play such an important and increasing part in health research.

Our presence, voices and contributions seem to be focussed on assurances, reality checking and practical advice. It is a chance for mutual learning. It is less about our patient experience though that remains a valuable driver that keeps us going. 

In Lynn’s words our involvement asks the most fundamental question – “It may be measurable but is it meaningful?”.

SOME OF THE KEY FEATURES & BENEFITS

1. Involvement of Patients & Public can provide assurance to Statistical Research and to Statistics in Health Research by helping…

  • Integrity – to demonstrate openness, transparency and accountability
  • Value – the knowledge and understanding that is derived from experience, voice, insight
  • Quality – the improvements made from practical suggestions, alterations and advice *

These are as such the big-ticket issues about the moral compass of research, the democratising and the governance as well as helping improve its quality yet they signal important aspects of trust and probity. 

Ultimately, with publicly funded health research is what is being measured meaningful for patients or is it just about measuring what is measurable.

2. In real life terms Patients & Public with Statistical Research helps to

  • Ground research in reality: about relevance, the possible and what is practical
  • Make sense of numbers: Thinking about understanding of language, images, descriptions and communications especially with the interpretation
  • Motivate the work: Acceptability and assurance to give confidence or offer caution

A number of researchers have commented on how they find this reality checking a means of staying in touch with the direct or consequential purposes of their work. They are assured and reassured by the involvement. It helps confirm the value of the work or invites further thinking. This can also be reassuring to the public to know that the patient voice has been instrumental in developing the research.

3. The Involvement can provide practical advice and contribute to… 

  • Attitude and viewpoints of patients/public: thoughts, concerns, opinion and perspectives
  • Advice and comment on actual numbers: advice, insight, reach
  • Communication and dissemination on statistics language, graphs and pictograms

As patients we are often bringing that experience to bear directly on the intervention (the medicines, surgery, treatments, the radiotherapy, etc) yet here it shifts to providing a more general perspective that helps with meaning and understanding. 

WHAT COUNTS FOR PATIENTS & THE PUBLIC?

For those of us who are Patients/Public Partners and get involved with Statistical Research, we may consider gaining

  • Greater awareness about statistics and the trial methods that are used
  • Increased knowledge and understanding of statistics and health research
  • Improved critical skills to read, analyse and interpret data to challenge media reporting and fake news 
  • Strengthened ability to make more precise observations and ask improved questions when contributing to research
  • Better understanding of the role patients/public can play in this type of research
  • Bear witness to the efforts and ethical considerations that are taken

WHAT DOES THIS ADD UP TO FOR RESEARCHERS?

For those of us who are statisticians and are considering involving Patients and Public Partners in our research and our analysis, we may consider gaining

  • New perspectives to improve data collection, analysis and interpretation and ensure research results are relevant and meaningful: patients and the public will bring their own lived experience to important data related questions such as the best way to collect data, what to take into account when analysing it and how to interpret it in a real-life context. Numbers are meaningless without a context. Patients and the public are key in embedding numbers with meaning.
  • Better communication skills: researchers will have to develop efficient and clear ways to communicate about data, statistics and statistical methodology. This is will help develop their communication skills 
  • Greater empathy: for researchers that are rarely in contact with research participants or patients; talking to them about their research and statistical methods is an opportunity to better understand, first-hand, the impact data and statistics can have in improving people’s lives
  • Understanding of our processes and assumptions: having to present and explain our assumptions leads to better self-understanding of our own processes and biases which improve transparency, credibility and ultimately better research. 

A FINAL TALLY

It may be worth noting that a deep knowledge of numbers and statistics is not an essential requirement to get involved – that is the role of the statisticians!  A basic understanding of calculations, charts and data and an interest in how to capture and report the most appropriate information can be helpful. You might end up learning about data analysis, trends, forecasts and much more but only if you want.

We can bring, think and apply our knowledge from budgeting, reading graphs and charts in the media. It is a great opportunity to meet loads of people who are keen to involve the public in this type of work as they want to make a difference.

Research will ultimately gain from patient and public involvement in statistics: numbers underpin quantitative research; there needs to be clear and open discussions about numbers to avoid power imbalances and ensure all stakeholders feel equally heard during the research process. This will lead to research that is more democratic and relevant to patients and the public.

We, as patients want to know if research doesn’t meet its primary, statistical endpoint is it the intervention, the research methodology and/or medication etc that was ineffective or the way we chose to measure it? 

* Integrity, Value and Quality taken from Alice Biggane’s research https://researchinvolvement.biomedcentral.com/track/pdf/10.1186/s40900-019-0170-2.pdf

If you are interest in learning more, the following sources might be helpful

Use My Data is a movement of patients, carers and relatives promoting the benefits of sharing data.  

HDR UK Voices – a network of Patient & Public Involvement with Health Data Research UK

Podcasts about numbers and risk with the statistician, author and broadcaster

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