Patients need more than information from Technology –
thinking about meaningful involvement
(These notes capture the main points of my talks at the ASPIRE - EDGE Conference 2018 and the mHealth event)
When we think about Mobile Health and 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.
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.
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