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New care and support language hub; The challenges of health misinformation; About Me standard update

Your weekly round up of the latest news, studies and views for professionals working in health information (26 March 2025).

New care and support language hub launched

Resources designed to explore the impact of language, challenge jargon and promote the use of more human language in care and support are now live. The new Think Local Act Personal resources explore the role of language in care and support and why it matters. There are discussions, guidance, and practical tips about using more human, everyday language. The new language hub also includes: 

  • An updated jargon buster, defining and challenging common terms.
  • Videos with reflections on language that does and does not work.
  • A guide for communicating about mental health. 
  • Blogs exploring the impact of language in care and support.

More guides on topics including neurodiversity and disability will be added soon.

Find the new language hub on the Think Local Act Personal website here.

The challenges of health misinformation

In this BMJ opinion article, Tina Purnat and Jocalyn Clark argue health misinformation and harmful online narratives are a major threat to public health and security. They say inaccurate information can create confusion, sow mistrust, harm health and undermine public health efforts. With people increasingly going online to explore concerns, the article says digital access, commercial internet platforms and artificial intelligence (AI) are supercharging the spread of misinformation. The authors warn oversimplified efforts to counter health misinformation are missing the mark and the challenges of health misinformation go beyond countering false claims.

Read the full article on the BMJ website here.

About Me standard is reviewed and updated

PIF partner the Professional Record Standards Body (PRSB) has updated its About Me standard. PRSB has made changes to the modelling structure of the sections and technical detail of the standard to support implementation. Changes include allowing multiple media files in each section and linking to the PRSB provenance data standard. Implementation guidance has also been included in the information model and enhanced in response to support requests and issues raised.

See the updates in full on the PRSB website here.

Report reveals shocking extent of untreated period symptoms

The Wellbeing of Women charity is calling time on heavy and painful periods in its new report "Just a Period". The report exposes the widespread experience of women and girls enduring painful, heavy periods without access to trusted information or treatment. Based on three surveys of more than 7,500 women and other real-life stories, the report shatters the myth that it is "just an unlucky few" who experience debilitating periods. Recommendations include improving education and reducing stigma at school, work and at home; funding more research into prevention, diagnosis, and treatment; and tackling barriers to accessing care.

Read the full report on the Wellbeing of Women website here.

Study: How 'What matters to you?' has been used for patient care

A scoping review explores how extensively and successfully the "What matters to you" (WMTY) initiative has been implemented in patient care since its introduction in 2012. The review found WMTY has been used for designing person-centred services, planning individual patient care and understanding patient and family experiences. It identified five key themes: what matters to patients, benefits of using WMTY, shortfalls of using WMTY, facilitators for implementing and barriers to implementation.

Read the full review findings via the Wiley website here.

Charity invests in virtual cancer clinic

A virtual cancer clinic can expand and help more people get the personalised care they need following an investment from PIF member Macmillan Cancer Support. Perci Health received the investment from Macmillan to expand its virtual cancer clinic. The investment is the latest development in Macmillan’s ongoing work to explore emerging new cancer care technologies and approaches. Perci Health offers personalised programmes of cancer care to individuals impacted by cancer and their loved ones. It uses a virtual cancer clinic platform to connect patients to a team of more than 85 NHS trained cancer specialists.

Find out more about the investment via DigitalHealth here.

Study: Assessing digital health literacy in older adults

A questionnaire designed to assess digital health literacy in older adults has been developed. The questionnaire, developed following a study in China, can be used to evaluate the current status of digital health literacy in older adults and identify areas where digital health competencies need improvement. Researchers said this provides a foundation for developing appropriate intervention strategies and targeted health education.

Read more about the study via the JMIR website here.

Call for patient and public involvement in digital transformation

The national medical director at NHS England, Sir Professor Stephen Powis, has said it is absolutely crucial that patients and the public are involved in the digital transformation of the NHS. Speaking in a spotlight session at the Digital Health Rewired event on 19 March, Sir Powis said the best ideas often come from patients and users of the healthcare system. Sir Powis, who will retire in July 2025, described the forthcoming 10 year health plan as an opportunity to look forward and design the NHS for the next decade.

Read more from the Rewired event on the DigitalHealth website here.

Blog: Neighbourhood health service – what does it mean?

In this blog for The King's Fund, senior fellow Chris Naylor says there needs to be a shared common understanding of the goal of a "neighbourhood health service". Chris says, despite lots of enthusiasm for the idea of working differently at neighbourhood level to improve health and care, people are not all talking about the same thing. Chris details three different versions of neighbourhood working and warns of a risk of trying to pack so much in that it becomes anything and everything – or nothing at all.

Read the full blog on the King's Fund website here.

See also