Brain and Spine Foundation CEO Marc Smith on NeuroLifeNow app

Posted in News, Blog

Brain injury survivors could create happier endings to their own stories by donating their data to a new app to secure real-time improvements in neurorehabilitation.

The app, NeuroLifeNow is using the lived experiences of people with neurological disorders to bring rapid and much-needed change to current inconsistencies in treatment, care and rehabilitation services and funding. [1]

It is also a chance for survivors, their families and carers to help change public perceptions of ‘invisible’ neurological conditions – simply by sharing their stories by 31 March 2021.

Marc Smith, CEO of the Brain and Spine Foundation, which launched the NeuroLifeNow app and website in collaboration with the Neurological Alliance, encouraged anyone with a neurological disorder to become a “data donor”.

Around 200 people have signed up since the website and app were launched last month, but 1,000 are needed by the March deadline to meet commissioning criteria.

“There is a big need to do something around unifying people's voices in what is a pretty uneven playing field with regards to access to care and rehabilitation and long-term management of chronic conditions,” Marc told us in a video link-up.

I suspect that our reach, even when added to those of the Neurological Alliance and other big [charity] players, is just the tip of the iceberg.

“We’re really just scraping the surface of the potential 13 million people [with a neurological disorder] who have a voice but maybe aren’t able to share it through those charity organisations.

“So we’re ambitious to try to recruit more people from the community so we can get that unified voice.”

App ease

Vitally, the app designers turned to those with lived experience of neurological disorders to ensure it is easy to use and meets accessibility guidelines.

Incorporating such expert views was “central” to the design team’s approach, Marc said.

“When it comes to the look and feel of the app, or the communications that we put out, we've tried to be very inclusive,” he added.

“And it's also worth saying that, although the program is, at the moment, digital, we're very aware that there are lots of people who don't have access to digital devices or have trouble using them.

“We're not excluding them at all, but we want to be able to develop the program first so that we can look at ways that we can expand it to include as many people as possible.”

And that also means members of professional communities linked to neurorehabilitation.

“We're ambitious for the project,” Marc said.

We want to try to distribute it not only to people or their carers and families who might be able to assist, but also, vitally, through clinicians and nurses and some of the services available in the community.

“It's going to effectively be of benefit to them and their patients, so we're looking at all sorts of different ways to get the app into the hands of the right people.”

Day-to-day data

The evidence provided by data donors taking part in NeuroLifeNow is gathered and analysed every month and shared via the Neurological Alliance with healthcare clinicians, professionals, and commissioners.

Information, which remains anonymous, is collated via monthly surveys. It’s a system Marc believes is popular amid the covid pandemic - and can pack a punch in bringing about change.

“One of the real eye-openers as a consequence of lockdown and covid is a realisation that data and insight and people's stories are often going to be the way that we can solve so many of the health and well-being issues that face us,” he said.

There's been an attitudinal shift. People, I think, are becoming more familiar or more accepting of becoming data donors. That's a way that they can help.

“If you live with a neurological condition, you can make your voice heard by donating your data, and we'll take that as an evidence base of lived experience during this time of covid disruption.”

The type of questions, Marc, said, needing answers from people with neurological conditions could include:

How are you finding the covid disruption?
How are you finding access to medicines or clinical help or rehab?
Has your treatment regime been disrupted? What else has taken its place?
How are you finding some of the alternatives being presented?

“As lived experience evidence,” Marc said, “we can present that to the commissioners which help give them a fuller picture of what's going on in their patch.”

Rapid response

Encouragingly, Marc is confident that the findings of the NeuroLifeNow initiative will be acted on promptly.

“Given the state of responsiveness of certain trusts and commissioners and individual clinicians, and maybe some of the practices, [change] could be almost immediate,” he confirmed.

“The joy about this particular survey is that we're getting almost real-time data back. Okay, it's on a monthly basis, but it's happening now.

“And if some of the trends and observations and experiences fed back are pertinent to a particular practice or a particular way of communicating or engaging with people, you can say, well, great! This has now been brought to my attention. I can change what I'm doing.

I'm hoping [the evidence] will provide a persuasive argument that actually, we do need to listen to the people and their experiences and respond.

Since the start of the pandemic, there has been “an exponential cry for help” from people with neurological disorders contacting the Brain and Spine Foundation’s helpline, Marc revealed.

“Interestingly, people are calling not only about their condition but also about the side effects of their condition; the mental health and wellbeing issues of not only having a condition - either them or their loved one - but also living in isolation.”

Other common concerns surround shielding information and that “deferment in their care or access to medicine might go on for a long time, indeterminately,” Marc said.

“There is significant distress on behalf of these communities,” he added. “The pressures are mounting, and these people are really suffering.

“Responsiveness and timely change are certainly what we're trying to drive. It’s about time the spotlight was put on neurology and the needs of the community.”

Anyone who takes part in the NeuroLifeNow project will also be invited to comment on the app's effectiveness and make any other suggestions for improvements nationally.

We’ll be reporting back on some of the early survey findings in the next few weeks.

More information on accessing the app and sharing your story here: https://neurolifenow.org/

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