Tuesday, 13 March 2018

Participació en recerca

What do you see - a bull’s head or a bicycle saddle and handlebars? 

Is health research the saddle or the bull - some people might see the protocol and others live the experience. 

But sometimes it is about more than the way we see each other. The words we use and the way we hear them can separate us.

Even a song can be interpreted differently by various artists and makes you wonder if we should say - Let’s Call the Whole Thing Off. One version of the song by George and Ira Gershwin is sung by Ginger Rogers and Fred Astaire and the other gives us Ella Fitzgerald and Louis Armstrong.

"But, oh, if we call the whole thing off
Then we must part
And, oh, if we ever part, then that might break my heart"

I mention Picasso's work and these other examples as I have been invited to speak in Barcelona. 

I have the pleasure of working with Paula Adam Bernad and Ion Arrizabalaga Garde from AQuAS, the Agency for Health Quality and Assessment of Catalonia*. 

We have, of course, different perspectives but instead of calling the whole thing off we are working together to shape the presentation I shall give - co-creating!

The differences are encapsulated by...

LANGUAGE - Some Catalonian, Spanish, English and of course a wee nimsh o’ Scots can actually bring us together

VOCABULARY - Participation is what I might call Involvement in England but does this really matter as long as we both are describing the same thing. 

EXPECTATIONS - What I thought might be good to talk about may not actually be of value to those who attend the Conference.

Ultimately, we want to see patient experience, the patient voice and the presence of patients and the public making a difference. But how....

We then began a really interesting and illuminating discourse by phone and email where we tested out different ideas. I began by posing some questions to help guide my thoughts and Paula and Ion asked more about the WHY.

I am moving from what we in the UK call Patient and Public Involvement (PPI) to how it is described in Catalonia - Patient and Public Participation (PPP).

The second theme that we have agreed upon is WHAT MAKES IT WORK. So this will form the basis of the talk along with the question: Què té a veure la pedra Rosetta amb la participació en recerca? 

You will need to revisit my blog on the 4th April to find out more.

* El Sistema d’Avaluació de la Recerca i Innovació en Salut de Catalunya (SARIS) és un instrument del Pla estratègic de recerca i innovació en salut (PERIS) del Departament de Salut de la Generalitat de Catalunya. El SARIS és un ‘sistema de recerca responsable’ que millora l’impacte del PERIS a través de l’anàlisi i la implicació dels actors. 

Friday, 2 March 2018

We need more than information from digital technology

Patients need more than information from Technology –

thinking about meaningful involvement

(These notes capture the main points of my talk at the ASPIRE - EDGE Conference 2018)

When we think about Digital Technology, whether apps, systems and processes, we need to start from the research participant. We need to see it through their eyes, wear that t-shirt, walk in those shoes, think with that mind

It is not enough to think about how clever the technology is; how smart it looks, how it uses artificial intelligence - if it doesn’t fit, I’m not going to use it – if it doesn’t help me access research, take part, help get involved, find the results
I love tech but I have a drawer full of gadgets, wires, plugs that I don’t use; apps I haven’t opened in weeks, email updates that I never open.
So, l ask you to really think about the Research Participant
Research participant is NOT just the person who arrives in a timely fashion to be recruited to a study

  •      It is about the public at large
  •      It needs to target specific communities of need – cultural, geographic,
  •       Consider where people who use or come across NHS Settings - GP, Pharmacy, Care Homes
  • A Printing Press 

  •       Think about how the technology suits our needs, fits with our lifestyle and uses information we already collect
  •       Crosses our daily path to the shops, the pub and restaurant

Technology and Innovation themselves are not the answer. 


The Printing Press was of no use if people can't read and write. With technology we have to think about how to help people use or make it so intuitive that it becomes easy.

Meaningful Involvement

Involving patients and the public are key to making this work. I have chosen to make these Four4Involvement to help make it meaningful: Research, Insight, Learning and Impact


Actively involve with a purpose and do so at the earliest opportunity and throughout...
  • The IDEAS Stage – About CHECKING on interest and worth                          
  • The DESIGN Stage - About OPINIONS on what and how                 
  • The DEVELOPMENT Stage – About TESTING about practicalities         
  • The APPLICATION Stage – About USING in real life
The Rosetta Stone

As we communicate with Patients think Rosetta Stone - - local language, government policy and pictures.


If you have one or two patient representative they are NOT your involvement. They should be there to help you plan your involvement...

  •      For different reasons 
  •      At different points
  •      With different people
  •      In different places


There must be some benefit beyond what it adds to the research. We have to look at the opportunities to gain from each other and to signpost to where people can learn more

I used my current favourites... 
Join Dementia Research
A free online course
National Institute for Health Research


We have to make an IMPACT. We must involve people in order to make a difference. It is basically very simple yet difficult and challenging.

Having recently bought a narrowboat I know the feeling. It is basically very simple, goes very slowly and for lots of the time you just keep it on a straight line. 

It also is a different culture with a new language and skill set. It is okay to make some mistakes and to seek advice and help. Patients are a really lovely community and very willing to help. So, are the narrowboat community who seem endlessly patient with me as I make contact again and again.