In this blog post, Rachael Twomey – Quality and Evaluation Officer at Macmillan Cancer Support reflects on the changes she has seen in health information during her career.
My working life in health information doesn’t quite span PIF’s lifetime of 21 years. However, health information has changed significantly during my 14 years in the sector – at least from the perspective of the different roles I’ve held.
Patient and public involvement
In 2004, when I took up the role of Information Officer at Mind, patient and public involvement in health information was not standard practice. Mind had a strong and historic commitment to mental health service user involvement in all its work. This included the production of its health information.
For me, the emphasis on involvement was new and exciting. It challenged my pre-conceived ideas about what ‘counted’ as evidence. It showed me how major gaps or misunderstandings could occur if the experiences and perspectives of mental health service users were not embedded in the production process. It has been heartening to see patient and public involvement accepted more widely as good practice and included as criterion in the Information Standard.
Scope vs personalisation
Another change I have observed is a change in scope from breadth and comprehensiveness to a focused and personalised approach. I realise now that many of the booklets I worked on at Mind were at a level of detail that would have been unnecessary for some of its readers and hard to navigate for others.
Although across the whole of our collections, many of us do want to provide a comprehensive service, individual products and services are increasingly tailored to be relevant to a particular individual at a particular time. Growth in the use of web-based technologies and engagement with user generated content (e.g. discussion forums and social media) have fuelled this change. Here at Macmillan Cancer Support where I work, we’ve been moving away from organising our health information exclusively by subject or publication format. We now organise content to support the needs of our service users and hope to build on this in the future.
The third major development I have noticed is the growth in our understanding of accessibility in health information. Workers in the health information sector have always promoted the use of Plain English and been aware of the social and psychological factors involved in health information. However, over the past decade, I have noticed a more widespread awareness of average literacy levels of adults in the UK and needs and requirements related to disability.
At Macmillan Cancer Support, we have seen a big investment in alternative information formats: easy read, audio and visual formats and information written to be translated into languages other than English. Our experience at Macmillan is that these resources have an appeal and meet needs across an increasingly wide audience. In the circumstances that prompt many people to seek health information – pain, anxiety, uncertainty – clarity, simplicity and a friendly approach can be crucial. There seems to me a growing consensus that accessible resources need to be as well-promoted and as high quality as ‘standard’ resources.
What does the future hold?
At Macmillan, we are aware of the growing number of people living with cancer that is treatable but not curable. Across many areas of health, the number of people living with a long-term condition is expected to grow. I believe the health information sector will need to build on the changes I’ve observed – involvement, personalisation and accessibility – if we are to meet these needs. Increasingly, health information providers will have a long-term role in many people’s lives.
The challenge for us will be to keep developing what we do so that we remain a trusted source of high quality, relevant information, as and when people need it.
Posted on Friday, 04th January 2019