Improving patient information: the importance of collaboration

The virtual awards ceremony for the BMA patient liaison group patient information awards takes place on 26 May. In this blog, PLG chair Chrissie Douglass reflects on issues central to the PLG’s position on why patient information is so important


Location: UK
Published: Wednesday 21 April 2021
chrissie douglas

The COVID-19 pandemic has shone a critical light on the communication and dissemination of health information to patients and the public. 

It has reaffirmed what we already know: inclusive, accurate, prompt information from trustworthy sources can be positively transformative. But it has also shown the power of misinformation and disinformation to cause harm and break trust. Equally, it has highlighted that not everyone in society has the same level of access to high-quality, timely, tailored information. 

Socially and culturally sensitive patient information from trusted sources has wide-ranging and well-documented benefits. These include supporting and empowering people to make informed decisions and be active participants in their health, improving healthcare outcomes, and increasing accessibility and efficient use of resources.

The provision of health information can offer an effective means of two-way communication between authors and users.

Creating information through co-production with patients is central to achieving a meaningful effect. Co-production involves active listening and developing equal partnerships that bring together experiential knowledge and priorities with medical and healthcare knowledge and priorities. Co-production should start at idea formation and continue through commissioning, design, production, dissemination, evaluation and feedback processes, and importantly lead to further work.

In this year’s awards process, the PLG has witnessed excellent examples of early consultation and co-production. ‘MND Buddies activity hub’ (MND Association) and ‘Prostate cancer tests and treatments: A guide for gay and bisexual men’ (Prostate Cancer UK) are just some examples from this year’s longlist. View the full longlist.

Paternalistic, top-down, didactic messaging that treats patients and the public as passive, homogenous recipients of care has proved unsuccessful. We all have a part to play in consigning such resources to the archives.

Importantly, co-production involves working with diverse groups of patients to enable cultural and social values, beliefs, and attitudes to be reflected and embedded in the material. Working with intended audiences also helps maximise accessibility for those with, for example, visual and hearing impairments, learning disabilities, and other accessibility issues, including language and different health literacy levels. 

Choice of words in patient information matters. To achieve equity and diversity in communication, we should interrogate the language we use, and reflect on how the words we use might be received. Words have the power to stigmatise, stereotype, alienate, blame, shame and cause stress for patients. Conversely, strengths-based language can give agency, empowerment and support. Co-production will help to achieve a positive reception.

The term ‘hard to reach’ is often used when describing groups experiencing the greatest health and social inequity. To improve the effect of patient information, we must reframe this assumption. For many patients and communities, important, high-quality and relevant information is hard to access. The onus is on us to make material accessible — not to claim that those who most require information are too hard to reach.

Where and how to share patient information is also critical. Online platforms can help disseminate material promptly and benefit many. However, the digital divide remains a barrier to accessing patient resources. Helen Milner from the Good Things Foundation has highlighted how there is an overlap between digital poverty and social exclusion, and poor health outcomes.

The information must reach those who need it most. Equitable access to digital information involves ensuring that people have the skills, knowledge, and confidence to use and navigate systems, as well as tools. It should also respect patient preferences.

With these issues in mind, the BMA PLG is looking forward to celebrating this year’s longlist, shortlist and overall awards winner at the virtual awards ceremony in May. I hope you will join me at the event to celebrate their success, and learn more about the incredible impact that charities, patient groups and trusted patient information sources are making to the lives of patients everywhere.