"Real faces" in health awareness materials; New NHS App family feature; Campaign to make dementia a priority
Study: The importance of seeing "real faces" in health awareness materials
People with rare diseases feel more supported when disorder-specific materials feature images of people with their condition, a study has found. The results of a digital survey of 50 respondents revealed people living with rare diseases felt seeing “real faces” of those with the condition fosters a sense of connection. It also combats isolation, and raises public awareness through greater exposure.
Some respondents did note the risk of stereotyping based on appearance, indicating the need for sensitive, accurate portrayal. Other factors discussed during the True Faces of Rare study included:
- The desire to see relatable faces within educational and awareness materials may reflect broader social needs for inclusion and recognition.
- People living with rare diseases and their communities said authentic images make disorder-specific materials "more memorable" and "more meaningful".
- The presence of real faces can also create a supportive atmosphere, particularly for those who may feel alone in their experience.
Read the study via the ScienceDirect website here.
New NHS App feature is a "gamechanger" for parents and carers
A new feature making it easier for parents and carers to manage a relative's health in the NHS App has been hailed a "gamechanger". Being developed by NHS England, the service means people can apply online to add another profile to their NHS App instead of having to do it in person – saving time and cutting admin for GP practice staff too. Once set up, parents or carers can easily switch profiles on the NHS App, enabling them to order repeat prescriptions, access medical information and manage appointments on behalf of someone else. Parents or carers who are registered at the same GP practice as their loved ones can apply by providing their details for verification checks. Nearly 12,000 people have already applied through pilots in 68 GP practices, with plans to roll the service out more widely from next year.
Read more about the new family feature on the NHS England website here.
New campaign to make dementia an urgent priority
PIF member the Alzheimer's Society has launched a new brand advertising campaign which shows the devastating reality of dementia. The campaign, called A Personal Appeal, aims to raise awareness of both dementia and Alzheimer’s Society among the general public with the charity declaring: "In order to make dementia the urgent priority it needs to be, we’re showing the devastating reality of dementia – and Alzheimer’s Society’s unique solution." The campaign has been launched across TV, cinema, radio, podcasts and social media, and includes an advert featuring Rachel. She shares her fears for her future after being diagnosed with dementia and says "I can't do this alone". But the room behind her is filled with people including dementia advisers, researchers, volunteers, fundraisers, carers and campaigners, bringing to life the charity's new brand platform – "It will take a society to beat dementia. Alzheimer’s Society".
Find out more about the campaign on the Alzheimer's Society website here.
Discussing mental health support in clinical trials
A new white paper highlights how patients and caregivers feel their mental health is too often overlooked in clinical trial participation. PiCC United, which aims to make it easier for people to engage, share their voices, and help shape better, more inclusive healthcare, set up a patient and caregiver discussion group to explore mental health support in trials. Patients and caregivers emphasised the importance of clarity at every step, supported by trusted peer-to-peer connections that provide accurate information, reassurance, and shared experience. Participants also expressed frustration that patients are often treated as “disposable” once their contribution is made. The findings also identified themes of:
- Emotional stress.
- An unmet need for built-in whole-person support approaches and systems,.
- A lack of human touch and personalised approach.
- Poor communication.
- A gap in acknowledging mental health needs that is created by a complete focus on the primary medical condition being researched.
Find the full white paper on the PiCC United website here.
Study: Evaluating digital health literacy differences
A cross-sectional survey study has highlighted ongoing health literacy differences and their impact on the use of digital health resources. Researchers conducted a detailed survey on mobile app usage, specifically based on features commonly used in apps by individuals with chronic diseases. The findings revealed that more than 1 in 4 of the Korean population demonstrated low levels of digital health literacy, with the lower levels significantly associated with older age, unemployment, lower income, and inadequate health literacy. The study highlights ongoing digital health disparities, emphasising the need for tailored strategies in mobile apps and digital health technologies. The study's authors say to address these gaps, targeted interventions that incorporate user-friendly mobile health technologies and improve general health literacy are essential.
Read the full study via the JMIR website here.
New book to help children understand health condition
A book commissioned by the Aspergillosis Trust has been written to help children understand what it means to live with a family member affected by the condition. The new children's book, called Dad and the Sneaky Spores, tells the story of one family’s journey when Dad gets sick, showing how love, understanding, and a little bit of science can make a big difference. The gentle story was written to help children understand aspergillosis in a gentle and reassuring way and is perfect for children, families, schools, and healthcare settings.
Find out more about the charity and the book on the Aspergillosis Trust website here.
Engagement session will explore screening communications
Health and Social Care Alliance Scotland (The ALLIANCE) is hosting an online engagement session to explore how screening invitations, reminders and results could be communicated digitally in the future. Partnering with Screening Oversight and Assurance Scotland (SOAS), part of NHS National Services Scotland, the session aims to gather views on how digital screening communications can be designed in a way that works for everyone – especially those who face barriers to digital access and use. The organisers point out there are no immediate plans to move to digital screening communications but say engaging early in the process will help shape future approaches. The session will be held on Tuesday 28 October, from 10am until 11.30am.
Find out more and register on the ALLIANCE website here.
Listen: How using storytelling is increasing eye screening attendance
A case study highlighting the value of patient voices and storytelling is discussed in one of the latest BrainFuel podcasts for health leaders and health communicators. Eleanor Stanley, a coach and communication specialist and PIF member, worked with Guy’s and St Thomas’ NHS Foundation Trust and the British Association of Retinal Screeners to design a film to increase attendance for diabetic eye screenings, especially among groups that are often harder to reach. During the podcast, Eleanor of articulate.health discusses the importance of authentic communication, the value of patient voices and how storytelling drives behaviour change.