Digital tools have the potential to help patients receive the right information at the right time but inclusion is key according to speakers at PIF’s recent event.

Innovative uses of social media, apps and targeted information were showcased by charities and NHS organisations throughout the day.

Speakers highlighted how digital tools could be used to:

  • Tailor patient information to avoid overload
  • Increase empathy and understanding of conditions
  • Reach groups who had disengaged from traditional contact
  • Tackle misconceptions
  • Increase awareness of organisations

Introducing the event, Sophie Randall, PIF’s head of strategy and partnership, said there were two main focuses – innovation and inclusion.

Leaving nobody behind in the digital revolution

Bob Gann, digital inclusion specialist at NHS Digital, started the day by talking about some of the challenges and difficulties of the digital revolution.

He highlighted Digital Life in 2025 by Pew Research Center which said health care would become ‘self administered’ but ran the risk of ‘a dangerous divide between digital haves and have nots’.

Bob said people with lower health literacy are less likely to use preventative services or access treatments.

As health information and services are increasingly being delivered digitally, we risk widening the health inequalities further creating a new ‘digital inverse care law’.

“The people who most need information and most need healthcare are the least likely to be online,” he said.

However, the reasons people are not using digital tools might be surprising.

Rather than a lack of access or skills, the top reason people gave for not engaging in the Consumer Digital Index was a lack of interest, followed by an impression the internet was ‘too complicated’ and fears over privacy and security.

“If we do not develop digital health tools that are compelling and valuable and meaningful to people, we won’t overcome all those other concerns,” said Bob.

He said organisations should not assume they knew what worked for people.

“It is not all about blaming individuals, it is not about saying ‘you are not using digital skills because you are not skilled enough’. It is about creating digitally-literate organisations.”

Digital literate organisations make it easier for people to use, understand and navigate information and services by:

  • Supporting patients and carers to build their digital skills and confidence
  • Providing a digital infrastructure which makes it easy to access online services
  • Co-producing information which is relevant and accessible
  • Taking the risk of digital exclusion into account when planning
  • Developing the digital skills of the workforce
  • Having knowledgeable and committed digital leadership

Utilising Facebook to improve patient engagement for breast screening services

Health improvement practitioners Gina Newman and Jess Mulroy from North Midlands Breast Screening Service spoke about how they used Facebook to reverse a 10-year decline in uptake.

The social media initiative has seen a 13% increase in first-time breast screening attendance in Stoke since a low point in 2016.

Gina said breast screening could be particularly hard to promote because you are talking about cancer which ‘puts the fear of God into people’, it is an intimate exam and there is a lot of misinformation.

They chose to reach out on Facebook because it is the most commonly used social media platform for cohorts who are eligible for screening.

The dedicated North Midlands Breast Screening Service Facebook page allows women to direct message with questions about the process, maintaining a degree of anonymity while accessing reliable information.

The page had also promoted a ‘sisterhood of empowerment’ with positive peer-to-peer encouragement from women sharing their own stories.

Gina and Jess also target GP practice’s pages when eligible women are due to be invited to prepare them for their letters.

They use sponsored content to target specific areas, tackle misconceptions about screening in over 70s via engagement posts and give advice on correct pathways.

Engaging with existing community pages allows them to reach new audiences and a number of health inclusion groups share their information and videos.

They found all of this enabled them to engage with ‘hard to reach’ and ‘perpetual non-attendees’.

Women who had previously failed to attend appointments contacted Gina and Jess through Facebook, rebooked and attended.

Using awareness days to promote patient services

Claire Oliver, patient services relationships and marketing manager at Anthony Nolan, discussed how online awareness days can be used to promote an organisation’s own services.

During Nurse’s Week 2019, Claire wanted to raise awareness of the support Anthony Nolan offers beyond its donor register.

“People see us a big bag of stem cells, they don’t know to look to us for support as well,” she said.

Claire created a package of content to be posted throughout the week, including Facebook, Twitter and Instagram posts and new content on the website.

The total reach during the week was 113,633 – a 316% increase on the previous year.

By far the most successful was a post was a day-in-the-life video of Anthony Nolan paediatric nurse Sarah Jude which made use of the new IGTV feature on Instagram.

Other content included an Instagram Q&A with lead nurse Hayley Leonard, videos of supporters thanking their nurses and internal comms, including graphics explaining the role of the nurses.

As a whole, the package of content resulted in increased donations, press coverage and a positive response from supporters.

However, Claire also highlighted some of the challenges she faced, including finding supporters who were willing to be filmed and confusion over hashtags.

She also warned the public may be getting ‘awareness day fatigue’ and reminded delegates good content should always come first.

Meeting information needs at diagnosis through email

Tracy Williams and Harriet Posner from Macmillan Cancer Support spoke about their tailored email information offer for newly diagnosed cancer patients.

“We know people need and want information at this time but they don’t always know where to go,” said Tracy.

She said there was also a risk of ‘information overload’ at the point of diagnosis.

In 2018/19 Macmillan ran a test campaign for ‘Don’t search – we’ve got this’.

People could sign up online to receive a series of 18 emails with information specific to their cancer type. Content focused on the practical, physical, financial, work and emotional support available.

The first eight emails were sent weekly, with the following emails sent monthly.

The order in which patients received the emails was tailored to the information they provided at registration.

In particular, Macmillan wanted to target two distinct audiences – those on lower household incomes and people in work and/or with young children.

More than 25,000 people signed up for the email offer with a higher proportion of people from the priority audiences.

There was a 30% average click-to-open rate across the entire nine-month journey.

When surveyed, 85% of users said it helped them feel more informed and 71% said it helped them manage the impact of cancer on their day-to-day life.

In February 2020 Macmillan launched a new TV ad and national marketing campaign encouraging people to sign up for ongoing information by email or post.

HealthUnlocked, the social network for health

Jack Porter, commercial development lead at HealthUnlocked, spoke about how the specialised social network allows people to access support and reliable information.

HealthUnlocked has more than 1.1 million members and four million visitors worldwide.

It partners with more than 400 non-profit organisations to provide dedicated communities for more than 350 conditions.

The site allows patients to join one or more communities provided for partner organisations, access a tailored news feed and needs assessment reports and take part in self-management programmes.

They can also take part in polls which can be used by partner organisations to find out what really matters to the people they are trying to help.

Content on the site is moderated by the partner organisations.

“We know we are a tech company – we are not experts in the 350 conditions we have on the site,” said Jack. 

He said the site helps users break down social isolation, become more confident and have better interactions with healthcare professionals.

Eighty-two per cent of users reported an improvement in confidence and 58% reported better interactions with their doctors. 

A recent independent study with University of Manchester found, after three months of using HealthUnlocked, 31% of patients shifted to higher PAM® activation group.

Jack emphasised the site, which is free to use for patients and partner organisations, was not just for the ‘young and tech-savvy’ – the average member age is 48.

HealthUnlocked is currently taking part in a social prescribing pilot with dashboards created for hospitals. 

If successful, it is hoped doctors and nurses will be able to refer their patients to communities for specific conditions.

Harnessing digital to give patients power over their healthcare

Alex Kafetz, director of strategy and insight at Digital Healthcare Council, spoke about changes in the way we receive information and how patients can be empowered to find out more about their care.

Last year, the council released Four design principles for digital health – a document setting out the principles it believes are essential to create a vibrant and sustainable digital health ecosystem that works for patients.

Alex shared his five tips for successful digital transformation:

  • Choose the right channel for the right population
  • Empower chief clinical information officers by giving them devolved budgets
  • Embrace digital small and medium-sized enterprises (SMEs)
  • Make technology projects part of your transformation programme
  • Kick start a new transparency revolution

Speaking about correct channels, Alex highlighted how some initiatives had failed to work in the past due to a lack of infrastructure. 

For example, patients were encouraged to text their healthcare professionals before staff work phones had been upgraded from old mobiles with text limits.

Discussing transparency, he said it was vital patients had access to a whole range of information about their healthcare providers to allow them to make informed decisions.

Having recently worked as part of the Ian Paterson inquiry, Alex said the case was an extreme example of what could happen when transparency failed.

Delivering personalised content for website users

Emma Hook and Mala Gondolia from Diabetes UK spoke about Diabetes and Me – a system providing tailored content for website users.

The project was started because of the volume of web pages on the Diabetes UK site, which could be hard to navigate, and the need to target two distinct audiences – those with Type 1 and Type 2 diabetes.

A soft launch saw website visitors invited to answer three short questions which then directed them to personalised content set out in a format similar to a Pinterest board.

The content is tailored to the user’s type of diabetes and their current treatment.

In the first six months, Diabetes and Me had 36,000 users. 

The average time spent on site was 11.5 minutes and the average pages per session was 12 – a huge increase from two minutes and two pages per session on the non-tailored site.

Diabetes and Me was then used as part of a large-scale media campaign – Be in the know.

This led to a further 273,197 conversions to Diabetes and Me with an average of 4.5 minutes on site and 5.1 pages per session.

The increased website engagement suggested the tailored site allowed people to access information which was more relevant to them.

Patients with Type 2 diabetes in particular, reported they were taking their condition more seriously as a result of engaging with the content.

Can simulation apps inform, engage and build empathy?

Jen Clifford, digital project lead at Crohn’s & Colitis UK, spoke about the In My Shoes app.

The immersive app allows anyone to step into the life of someone with Crohn’s or colitis for 24 hours.

Its aim is to increase public understanding of the conditions, break down stigma and reduce isolation and encourage people to do something differently as a result of using it.

Jen said these aims are particularly important for hidden conditions which are often misunderstood.

In My Shoes gives users a series of notifications and tasks prompting them to think about how the conditions can impact daily life.

These include finding a toilet within three minutes, reminders to take medications and cancelling plans due to fatigue.

Based on what happens during each task, users are shown the likely impact on pain, energy and mood. They are also asked how they feel having completed (or not) the task.

Three questions asked before and after use of the app aim to evaluate understanding and empathy changes.

The charity initially set a goal of 5,000 downloads in the first year. Within two weeks it had hit that target and was the number two health and wellness download on Google Play.

The app was launched more widely in November 2019 leading to more than 120 items of media coverage.

There were 11,000 downloads in the official launch week and the total number of downloads is now more than 23,000.

Jen said more than 25 per cent of users completed all 19 tasks – easier said than done when five of the 19 are to find a toilet within three minutes.

Data collected from the questions asked before and after using the app suggested an increase in empathy and understanding among users.

Crohn’s and Colitis UK has also been contacted by employers who said using the app had changed how they will handle one-to-one sessions with their staff who have the conditions.

A consultant gastroenterologist who used the app said: “For years I’ve tried to put myself in the shoes of my patients and though I always thought I did this, it really made me think about how much I have under-estimated the impact of IBD on their life and all aspects of it.

“In fact, having had a day of using it, I started to think ‘I’m not sure I can do it tomorrow because I’m at work’ – the irony really that it makes you think like that – whilst patients never have a choice and can’t turn off their disease like we can switch off the app!”

Researchers have since contacted the charity to discuss looking deeper into the impact of using the app and how its design could be used to help people with other health conditions.

It is hoped this year will see In My Shoes become validated to become part of the training programme for IBD nurses.