Farewell from the Editor
NHS England shows us how far dialogue has to go, maintains Wendy Barnaby.
This is my last issue of People & Science. As I sign off, NHS England has announced that it’s postponing the introduction of its care.data scheme, to raise public confidence in it.
The goal of the scheme is admirable: to add primary medical records to medical data already gathered, to track patterns of treatment and improve outcomes. But the NHS’s failure to be clear with the public about the possibility of opting out of the scheme has rankled. And its incompetence in discussing how the data will be stored and whether it could be misused, have resulted in the whole scheme being put on hold.
Hasn’t NHS England heard of public engagement? Dialogue with the public?
Public voice absent
Care.data’s governance structure makes no mention of the public. Addressing the Commons Health Select Committee, Dr Daniel Poulter MP, Parliamentary Under-Secretary of State at the Department of Health, was at pains to underline the fact the care.data team had listened to stakeholders in setting up the scheme. But care.data affects every member of the GP-going public, and people at large haven’t been consulted at all.
At the Committee hearing, Barbara Keeley MP referred to members of the public she had seen interviewed on TV, who were asked about care.data. Not only had they not heard of it, but they were suspicious of it.
One of them envisaged information about mental health being disclosed to employers. Poulter defended care.data’s intention to include mental health data, on the grounds that it is needed to improve treatment. Keeley maintained that the failure to take seriously the public’s worries as expressed in the vox pops had undermined confidence in the project.
‘There’s a great deal of talk in the NHS these days about stakeholders,’ she said. ‘I think that every single patient whose data you want to do something with is the real stakeholder.’
Reminiscent of GM
Tim Kelsey of NHS England kept repeating that they would use the six-month delay to raise awareness of the scheme, to get the public on board. ‘My job is to make sure that in six months’ time we have the public with us,’ he said.
His attitude is depressing: reminiscent of the gung-ho GM lobby before it realised it had to listen to the public’s views.
During my 12 years as Editor, grant-making bodies and some scientific institutions have increasingly emphasised the importance of public dialogue. This has largely driven the myriad of events at science festivals, theatres, cafes and schools. These happenings are not dialogue, but they encourage the public to feel confident about engaging with science and entitled to voice an opinion about it.
Many natural scientists have participated. It would be good to see more join them, by making their efforts count towards their careers. And occasionally, scientists still need to be convinced that the public is not stupid, but simply uninformed – as they are themselves, about research outside their speciality.
A long way to go
How far have we come with dialogue? An evaluation of ScienceWise activities concludes that the organisation ‘has had significant positive impacts on public policy on developments in science and technology.’ And according to The Centre for Science and Policy at the University of Cambridge, many dialogue exercises have made a difference to research councils’ policies.
There is, however, a long way to go. Take NHS England. And although government and other initiatives generally include some sort of public engagement, its results often languish outside decision-making. As Involve puts it: ‘All too often, public services view engagement with local people as a tick-box exercise or nice-to-do, when it should be a cultural norm, embedded in their organisational DNA. All too often, the results of public engagement are left to gather dust on a shelf rather than being used to make a difference.’
Over the last 12 years, this magazine has kept up a steady stream of opinion, debate and reflection on the importance of dialogue and public engagement. Undoubtedly, this will continue on the British Science Association’s website. Do add your own opinion! Raise the public voice about the way science affects you until NHS England and other similarly deaf bodies hear and, more importantly, listen.