Data? The word makes it sound like a lot of numbers.

(This post was originally written for NIHR and was on the old website)

The term itself seems to divorce it from the human aspect. Yet for health and social care data is fundamentally intelligence about us. It is our information. 

If we are to genuinely make a difference to healthcare then we all need to get up close and personal with data. 

We should all know that we can opt out and say no to our data being used. I am talking here about the stuff that is gathered about our illnesses, conditions and treatments not about our address when the NHS needs to be in contact. 

Equally, we should be able to know how we can shape the wider dialogue about the use of data. We should be able to easily find how to contribute to discussion at local NHS Trusts, General Practice and other organisations. We should be asked our opinions and perspectives. We should know what is being done with data to improve health and social care.

When any research is being contemplated using large data sets there is, I believe, an absolute imperative to pro-actively reach out into the community to engage and involve the public. This has to go beyond having a couple of patient representatives on a committee. 

This more expansive approach to involvement is necessary if we are to maintain trust. It is needed if we are to fully understand and allay people’s concerns. It should be required as a means of exploring some of the more complex moral and ethical dilemmas that we are likely to face. 

Recent high profile breaches of data illustrate the importance of doing this constantly and well. It is not a matter of choice. 

For those of us in Patient and Public Involvement this is a real opportunity to encourage public presentations and open discussion on the use and value of data. Such events must be a true sharing of information.

The patient communities in cancer have been very active over many years as they saw the potential of using and sharing data. We were invited to many meetings and present at events and conferences. Our combined voices have helped to improve diagnosis, treatment, care and survival rates by working closely together with clinicians, researchers and data teams. 

This knowledge is explained by Dame Fiona Caldicott, the NHS Data Guardian in the 2017 Report:

"Data about people’s experiences of health & social care has huge potential for improving services and discovering more effective treatments & ways to provide care. Those benefits will not be realised without public trust."

Some of the most innovative practice, I have come across, in active involvement is actually with data in research. 

The team behind Cloudy with a Chance of Pain are holding an event in July to celebrate the way patient involvement has helped shape their research but also to let the public find out more. 

I attended a workshop for Nottingham BRC recently where patient were working in partnership to gather and analyse qualitative data. 

I am sure there are many other examples where the public are making a difference so please let us know. 

Last but far from least, we also need to know what happens with data that is used. It cannot be a one way street with the public providing all the information. 

We need to find ways to help us all to use data to remain healthy as well as make improvements when we are ill. 

These fabulous animations, from UseMyData  are a great beginning - https://understandingpatientdata.org.uk/animations

Derek was one of two patient/public members of the Ministerial Data Strategy Board in 2018-19. 

Making Your Voice Heard

A few notes from a workshop for members of the Patient Forum at the British Society of Periodontology (BSP). The Patient Forum is a great diverse group of those directly affected by gum conditions who want to improve gum health by being actively involved with BSP and dentistry. You can follow @BSPerio on Twitter

An introduction

It may seem odd that a workshop on Making Your Voice Heard is facilitated by a throat cancer patient. I can assure you that there is no irony. I would actually say that I found my voice as a result of that experience. The diagnosis of a life threatening illness can tend to do that as it reminds us of the importance of living. 

I have found that being actively involved in health services and research helps me understand my health, make sense of what occurred and makes meaning for my actions.

Simply, I want to make it better for others and that is something that the great majority of people working in healthcare services also want to see. Being involved with researchers adds further value as we get an understanding of the much broader issues and the uncertainties. 

It is precisely our direct personal experiences that help us feel, think and give us the 'power' to make our voices heard. Such experiences provide us with information, knowledge and understanding. These can provide insights that are of great value to those providing health and social care services or seeking to do research.

Start by thinking about what you want to improve or change?

We began the workshop by considering where people were in their experiences of the condition and what they wanted to improve. The professionals who were present joined in as they too have opinions on what needs to change.

The group were asked to think about their experiences in 4 phases: 

1) the time before diagnosis

2) the actual diagnosis

3) the treatments

4) living with on a day to day basis. 

This can be a useful way of moving beyond just telling our 'story' to reflecting upon the various events that happened. 

Our experiences provide…

·       Information - about what happened where and when

·       Knowledge - about living with our condition and being treated

·       Understanding - about what it feels like to us and our families

It can also help us consider what could be made better. We may want to change lots of things but it is sometimes best to start with something we feel strongly about and think that there may be a solution.

The Forum members worked in two groups and chose to consider improving dentist awareness of gum problems and addressing aspects of service provision, particularly for those who might not be able to access service. 

Where to make our voice heard

In this instance, we presented to each other rather than to an individual or an organisation but in real life it is always worth considering who you are talking to, their role and what influence or power they have in helping deliver the change. 

A presentation to a local Commissioning Group will be different from a talk to room of dentists. It is therefore helpful when practicing your presentation to ask those listening to place themselves in the shoes of the intended audience.

Shaping what we want to say 

The basic framework described below was used with Macmillan Cancer Voices and developed initially from the College of Health by Gillian Fletcher and Jane Bradburn. 

When we get a chance to make our voice heard it is worth having a framework in mind to help structure your thoughts and to make sure we cover a number of points. 

The groups were asked to think about what a) a clear statement about our personal experience (something short and pithy that catches attention) b) Policies or Statements (what guidance and information is there about gum health) and c) Any audit or observations about what others think (to show that you have talked to others)

It can be useful to describe the problem but even better to be able to suggest some solutions. It can be helpful to say how you might help.

As we were in a practice or rehearsal mode the only rule was that any feedback had to be as a  positive statement.

The short presentations by each group were succinct, powerful and compelling. The points raised covered the good and the poor of patient experience, recent evidence about practice and addressed health inequalities. Attendees commented on how the framework helped them get their points across and that it didn't necessarily need a group.

One last point, which we didn't touch on in the workshop, is about 'holding to account'. In other words, towards the end of any meeting with healthcare professionals or commissioners it is always worth asking what is going to happen next, when will it be done, who is going to do what, how will we know and where will we meet next.

Learn from others

Patient involvement has increased over recent years so it is always worth thinking about other patient communities with whom you might have things in common. 

For the BSP Patient Forum this might be head a neck cancers, patients with thyroid problems or having had a stroke. Quality of Life is a major factor in healthcare so you may wish to look at those doing research into eating, swallowing and fatigue. Access to services was repeatedly raised in the workshop so you may also to look at provision of services and the issues around the determinants of health. The recent Marmot Review 2020 makes sobering reading.

And finally

Remember, it is NHS policy to involve patients and public with the development of health services and with research. For many years, we were missing from the tables and from the discussions.

A cartoon, years ago (I think it was in Punch), showed a Consultant with his registrars all beside a patient in a bed. The Consultant holds his hand up to stop the patient speaking and says “When we want your opinion, we will give it to you!” It may be an exaggeration but it captures a certain truth about how things were. 

One medical journal illustrated us as ‘alien creatures’ at the table at the concept of us being involved with research.

We are not at these meetings to be the clinicians, the researchers or the scientists. That it their job. We are present to remind them of the purpose, provide insight from our experiences and together help create and develop the future.

What was particularly assuring about the workshop was the commitment by British Society of Periodontology (BSP) to involving people with direct experience of gum disease but also their intention to have representation on their Council.

Thank You to all the members of the Patient Forum and Professor Ian Needleman and Professor Nikos Donos, the 2020 President of the BSP.

Note: The BSP Patient Forum is supported by an unrestricted grant from Glaxo Smith Kline and it was so good to see a member of their staff in attendance and taking an interest in how patients can be involved.

Further Reading

You might like to read some of my other thoughts on Patient Advisory Groups written for the Nottinghamshire Breast Cancer Group. This continued with From Story to Reflection - Part 2 ; Purpose and Plans - Part 3 and Developing People - Part 4.