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Call for accessible healthcare information; Toolkit for researchers; Trust in digital health platforms

Your weekly round up of the latest news, studies and views for professionals working in health information (6 November 2024).

Lack of accessible information for people with learning disabilities 

A Healthwatch report highlights accessible communication and inclusive healthcare as one of four key challenges facing people with learning disabilities. People with learning disabilities reported being refused help when requesting accessible information from the NHS. They also struggled to find information about services. The report calls for the involvement of people with learning disabilities in designing support services, including how information is presented. This should include better provision and signposting of information to support. The other three challenges were:

  • Moving between services – including difficulties in transitioning from child to adult services, frustrations about how hard it was to find information about local support and a lack of support to complete official paperwork.
  • Services closing – including struggles to find respite care and day services being affected by staff shortages.
  • Social life – including concerns about the declining mental health and isolation of those without access to technology.

Read more about the investigation on the Healthwatch website here.

Study: Social characteristics influence trust in digital health platforms

A new study explores the relationship between social characteristics of caregivers of children and young people and trust in digital platforms to store and share personal health information. Researchers found living in a rural area resulted in lower concern for data privacy and security, while having an undergraduate or graduate degree resulted in higher levels of concern. Living with a chronic disease increased levels of concern regarding data privacy and security. However, those with a chronic disease were more willing to use digital platforms for clinical care and to share personal health information for not-for-profit research. Caregivers were most concerned about data breaches involving data from their children but also highlighted that digital platforms would allow for better coordination of care.

Read the full study findings via the JMIR website here.

Participants say health research has been a positive experience

More than 9 in 10 participants in health research are keen to take part in further studies according to a national survey. People who took part in health and care research studies supported by NIHR Research Delivery Network (RDN) during 2023/24 were invited to take part in the survey. A total of 35,519 research participants completed the experience survey, the highest response to date, with the vast majority of people saying they were glad they had made the decision to help further health or social care research.

Find out more about the survey results via the NIHR website here.

Call for investment in women's health services

A new report highlights the critical need to invest in women’s health services. The report by the NHS Confederation, Create Health Foundation and London Economics reveals the high costs to the economy of women being unable to work due to a range of conditions not being treated effectively. Absenteeism from work due to heavy and painful periods, endometriosis, fibroids and ovarian cysts costs the UK economy nearly £11 billion every year. According to the report, an additional £1 invested in obstetrics and gynaecology services per woman in England could generate an estimated £319 million return to the economy. 

Read the full report on the NHS Confederation website here.

Technology recommended for heart failure patients 

Two technologies for heart failure patients have been recommended in final diagnostic guidance by PIF member NICE. The HeartLogic and TriageHF work alongside cardiac implantable electronic devices like pacemakers and can accurately detect the signs of worsening heart failure. The algorithm-based devices aim to help keep people diagnosed with heart failure out of hospital.

Read more about the technologies on the NICE website here.

Toolkit will help researchers working across more than one UK nation

The Health Research Authority has worked in collaboration with NHS Research Scotland, HSC Northern Ireland and Health Care Research Wales to create a toolkit for carrying out research across borders. The toolkit is designed to support researchers planning, setting up and conducting NHS or HSC research in more than one UK nation. It provides information on the key differences and similarities in research approval processes and aims to help reduce the time taken to start research.

Read more about the new toolkit on the HRA website here.

Find the toolkit on the NHS Research Scotland website here.

Report says more than 10 million lack access to workplace health support

The Royal Society for Public Health is calling for a universal right to a healthy workplace for all employees. Research by the society found nearly half (47%) of the UK workforce is without access to essential health support, like routine health checks or flu vaccinations. It also found people working in lower paid industries like agriculture and hospitality are disproportionately represented in the figures and most likely to miss out on support.

Read more about the report on the Royal Society for Public Health website here.

Event: Discussing the ethics of implementing AI in healthcare

The NIHR is hosting a free, in-person event dedicated to the ethics of implementing AI in healthcare this month. A Roadmap for an Ethical AI in Healthcare will be held at The Science Gallery, London, on Thursday, 14 November. The day-long event will feature speeches and panel discussions tackling the ethical dilemmas of implementing AI in routine clinical care. 

Find out more about the event via the Eventbrite website here.

See also