New standards for research participant information; Improving public health communication; AI evidence

Quality standards aim to improve information for people joining clinical trials

The Health Research Authority (HRA) has launched quality standards to improve information given to people invited to take part in research.

The Participant Information Quality Standards aim to help research organisations understand what good participant information looks like.

They set out the basic criteria all participant information must meet, covering language, accessibility, and mandatory content.

The standards were launched alongside Design and Review Principles showing researchers and Research Ethics Committees (REC) what the important ethical considerations are for participant information.

Read more about the new standards on the NHS HRA site here.

Improving public health communication for disabled people

A report by the Voluntary Organisations Disability Group identifies major failings in how the government communicated with black, Asian and minority ethnic disabled people during the COVID-19 pandemic.

A Spotlight on Injustice offers 18 recommendations for improving public health communication with these groups including:

• Adding British Sign Language to public health broadcasts
• Using multiple formats for written information, such as Easy Read, Braille and large print
• User-testing the NHS app with relevant users
• Working with groups representing black, Asian and minority ethnic people with disabilities to decide on which languages to use other than English.

Download the final report from the VODG website here.

Evidence hub identifies 10 promising AI interventions for healthcare

A new NIHR evidence collection looks at how well artificial intelligence (AI) is working in healthcare.

The collection aims to provide evidence to help informed debate at a time when articles on the topic may exaggerate both the positive and negative impacts of AI.

It brings together 10 studies looking at 5 healthcare challenges:

• Detecting heart disease
• Diagnosing lung cancer
• Predicting how a disease might progress
• Personalising cancer and surgical treatment
• Reducing pressure on A&E.

View the evidence collection on the NIHR website here.

NICE plans for more ‘relevant, timely and usable’ guidance

PIF member NICE has set out how it plans to meet the needs of a changing healthcare landscape.

In its online annual impact report, it points to an extra 4 priorities in its work of assessing and recommending healthcare treatments:

• Relevance
• Timeliness
• Usability
• Demonstrable impact.

The report also highlights NICE achievements over the past year, including bringing together all its recommendations on health inequalities.

View the impact report on the Indepth NICE website here.

Team recognised for care of people with autism

An emergency department team at PIF member Barts Health NHS Trust has been accredited by the National Autistic Society.

The Autism Inclusion Award was given to the team at the Royal London Hospital for its care of autistic adults and children.

Assessors highlighted the support and training provided by autistic champions.

Read more on the Barts Health NHS Trust website here.

Event: Ageing without children and later life inequalities

A free online event explores if ageing without children leads to health inequalities.

Among other activities, attendees will hear from people who are ageing without children about their experiences and challenges.

The event on 28 September is organised by Think Local Act Personal.

Find out more and book via the Think Local Act Personal website here.

Lymphoma Action wins award for collaboration on rare cancer map

PIF member Lymphoma Action has won a top award for partnership work with a Japanese pharmaceutical company.

It achieved Gold Standard in the 2023 Patient Partnership Index.

The award is for partnership work between pharmaceutical and biotech companies, and patient groups

Lymphoma Action worked with a company called Kyowa Kirin.

Together, they created an interactive map pointing healthcare professionals to treatment centres for a rare type of cancer called cutaneous T-cell lymphoma.

Find out more on the Lymphoma Action website here. 

Guidance on free-of-charge medicine schemes

NHS England has published guidance to integrated care systems (ICSs) about signing up to free of charge (FOC) medicine schemes.

An FOC medicine scheme is where medicine is provided free to a person or group of people by a pharmaceutical company.

The guidance lists instances when ICSs should not sign up to an FOC scheme. These include where:

• There is no unmet clinical need
• A licensed medicine is being offered only so the company gets market access ahead of a commissioning agreement
• The pharmaceutical company has not made a submission on a topic NICE has said needs guidance.

Read the full guidance on the NHS England website here.

Event: Free webinars focus on social prescribing

The National Academy for Social Prescribing (NASP) is running free webinars in August and September.

The dates and topics are:

• 16 August: Improving access to social prescribing through care navigation and online consultations
• 22 August: The National Association for Voluntary and Community Action social prescribing project
• 12 September: A multifaith exploration into social prescribing.

Register and find out more on the NASP website here.