Script writing for aphasia film: On the tip of my tongue
Writing clear and engaging factual content for a short film to raise awareness about the communication disorder, aphasia. This involved desk research and working with the filmmaker Jonathan who is living with aphasia after a stoke.
Watch the trailer
Find out more about the film.
Medical blogs and social content for Cerca Biotech
Writing blogs, compiling an e-newsletter as well as leading on social media content aimed at oncologists, pathologists and other clinicians for Cerca Biotech, as cancer diagnostics focused company
Examples include:
An interview with a patholoigst
An overview of advances in metastatic breast cancer treatment
Pancreatic Cancer UK: emotional support resources
Pancreatic cancer has a huge emotional impact on patients and carers, but up until now the charity had not developed any particular resources addressing this.
This involved a research review, interviews, forum and social media consultation and formation of a co-production group.
Using this insight new leaflets and two more detailed web pages were produced.
The leaflets are specifically designed to provide bite-size, support content at a time when people are overwhelmed and distressed.
The web content goes into further depth and provides practical strategies and tips from patients and carers that people can act on.
The charity are very happy with the outcome and we hope it make a difference to patients and carers at a very difficult time.
Feedback from Emily Morgan, Senior Information Manager:
"We’re really pleased with it all – it’s definitely filled a gap in our info. Thanks for all your work on it – it was great to try something different with this, and I think it’s really paid off."
Blood Cancer UK, clinical trials blogs
Interview-based blogs with patients and health professionals to help the charity ‘tell the story’ of what involvement in a clinical trials is like. The idea was to help broaden the reach of the clinical trial service by sharing the experiences of people like Shibu, nurse Millie and Andrew Pettitt.
The Difference Collective, Health literacy training and expertise
Anneliese was a Health Literacy Expert on a project team for a large, US-based pharmaceutical client. Advising on best practice, critiquing, and rewriting medical information and developing health literacy training, including scripts for training videos and a glossary of plain English terms.
Jo’s Cervical Cancer Trust, Cervical screening policy changes
Developing new content on changes to the cervical screening programme in Wales.
The content was based on a review of the latest research, consultation with expert professionals and analysis of social media response to these changes.
This was designed to address audience concerns about these changes by clarifying the evidence behind them in a sensitive way.
Feedback from Kate Sanger, Head of Policy and Communications.
“We had a really tight deadline to explain a new complicated policy change to our community. Anneliese created new content and managed the peer review process resulting in easy to read answers for our website. They were also referenced by other health bodies looking to explain the change themselves.”
Shape Up For Life Hampshire
Creating insight driven web content for a public health programme for people with long term health conditions: www.shapeup4lifehampshire.co.uk/ This included rewriting 4 webpages to ensure that there was a smooth and logical user journey that drove action and encouraged people to sign up to the 12 week lifestyle programme.
Additionally we wrote new content about the programme that tapped into insight from focus groups that showed that the audience wanted positive, solution focused language and tone.
Diabetes UK, reviewing and updating publications for people living with diabetes
Re-developing the charity's core publications for people with type 2 and type 1 diabetes.
This involved user research and testing with patients.
As well as review and editing of the booklets to reduce the amount of content and make it even more accessible and relevant for the audience. Alongside this we conducted SEO research and optimized the corresponding webpages.
Feedback from Isobel Sims, Publications Officer, Diabetes UK
“Anneliese worked with us on a big rebrand and refresh of one of our most popular printed health information guides, as well as carrying out user testing and advising on SEO for the corresponding web content. Anneliese was extremely professional, punctual and helpful and had a great network of existing contacts to draw from for this project. We're really pleased with the result and have had great feedback that the guide is now clearer, easier to understand and adheres to plain English standards much more closely. Really looking forward to working with Anneliese on the next guide in this project and hopefully collaborating again in the future!”
The Patient Information Forum: Keeping health literacy in the spotlight
Anneliese’s guest blog for the Patient Information Forum discusses how to keep health literacy at the top of the agenda and create health-literacy optimised services: This blog was originally published on the PIF website https://pifonline.org.uk/blogs/health-literacy-spotlight/
Health literacy is more important now than ever before. The outbreak of coronavirus pandemic has also meant we are living through an ‘infodemic' – an overabundance of information, some accurate and some not, that occurs during an epidemic.
However, a recent systematic review from Baccolini and colleagues found that: “Low health literacy is a public health challenge throughout Europe, where one in every three, to almost one in every two, Europeans may not be able to understand essential health-related material.”
As the Patient Information Forum’s own invaluable infographic highlights, the impacts of low health literacy are far reaching, contributing to increased health inequalities, impact on self-care abilities and fundamentally leading to increased preventable ill health and death.
The COVID-19 pandemic has also uncovered and exacerbated multiple health inequalities that already existed. Tackling the issue is vital.
An increased focus on health and exposure to health messages, may have fuelled mistrust, alongside a growing appetite amongst the public for education and support to improve health literacy.
For example, the 2021 Edelman Annual Trust Barometer shows globally the trust in all information sources is at a record low but the public are placing more importance on increasing their science literacy.
What is being done to tackle low health literacy?
In the UK, the NHS is promoting online health literacy courses for staff and the Accessible Information Standard.
Charities such as the Good Things Foundation are working towards upskilling people and improving digital and health literacy.
Last year I worked on a pharmaceutical industry project for The Difference Collective. This sector is also now prioritising health literacy in terms of optimising its health content and materials for their various audiences.
Keeping a focus on health literacy
Health literacy factors in health behaviour. A recent report by the Health Foundation concludes that in England government policies to improve health have focused on individual behaviour change, with very limited success.
The Health Foundation advocates a move away from this and highlights that: “Population-level interventions that are less reliant on individual agency and aim to alter the environments in which people live should form the backbone of strategies to address smoking, alcohol use, poor diet and physical inactivity.”
I feel strongly that in order to keep health literacy at the top of the agenda there needs to be a similar top-down approach.
Focused on ensuring institutions and organisations provide healthcare and health information that meets everyone’s health literacy needs, where they are now.
Creating optimal environments that enable people to understand and improve their own health, whatever their situation.
Knowledge of these issues and buy in from leadership teams and decision-makers will ensure health literacy is included in policy and overarching strategies for health charities and other organisations.
How can you create health literacy optimised services?
The PIF TICK quality mark and the Accessible Information Standard are two interventions that can help ensure this higher-level approach to including health literacy in patient information strategy.
Audience mapping and an understanding of health information reach is vital to this strategic approach.
Are you producing the information and support your users need that is accessible and right for them?
All health information producers should have an audience and insight and strategy underpinning their work.
This approach makes sense as research shows health messaging is more effective when it’s crafted to target different groups of people, or tailored to individuals.
This is where audience segmentation comes in.
Segmentation can be focused on targeting different demographic groups. For example based on age, socio-economic status, or ethnicity.
But messaging and content can also be tailored based on other psychological, behavioural or social factors.
Examples include people’s access to social and media resources, e-health literacy skills, vaccine beliefs or attitudes to antibiotic resistance.
Health literacy and accessibility audits can also help highlight areas for improvement.
Whilst, readability is important, health literacy work should go further than this.
For example, a systematic review showed health literacy interventions for cancer patients are most successful when they combine face-to-face interactions with health professionals and the use of multimedia technologies or devices as well as ensuring an emphasis on identifying vulnerable individuals and groups with low health literacy.
Something to consider when developing new services or health content.
Where next?
This issue is a complex one, but steps you could take today include asking your leadership team whether health literacy is included at a strategic level.
If you’re a decision-maker yourself, think about how you could take a step-back and include some audience mapping and segmentation into your work to identify those most at need and to ensure you are working to meet their needs.
Even where budgets are tight and teams are busy taking this pause could mean that funds and time are targeted most effectively.
Self-care tips for health communicators
This article was published on the ProCopywriters website in March 2022
Whether you realise it or not, as a health writer or health researcher you are exposed to a barrage of health messages and health experiences. Maybe you are writing about a life-threatening disease, reading lots of research articles about mortality rates, or talking to people who have been through a traumatic diagnosis. It’s possible that you yourself have also been impacted by the diseases or conditions you are writing about.
It’s important not to minimise the toll it can take.
In my case, I had specialised in writing and researching about cancer, and been doing it for a long time, before I really started to notice the impact it was having on me. That’s when I began to untangle my own issues, mostly relating to my friend who had died from bowel cancer years before I started this profession (read my other blog about this).
What can impact on health communicators' mental health?
It’s worth knowing about vicarious traumatisation, defined by the British Medical Association as ‘a process of change resulting from empathetic engagement with trauma survivors.’
It is particularly acknowledged as something that can happen to counsellors, health professionals: people supporting those impacted by abuse and violence. There seems to be less out there examining the phenomenon in people researching and supporting people with serious health conditions. Which in themselves can be associated with trauma.
As well as vicarious traumatisation, there is the general burden of being exposed to lots of negative experiences, worse case scenarios, and unmet needs. For example, when I was working on a project about delayed diagnosis in prostate cancer, I didn’t hear about what went well, but instead what had gone wrong. In my research work, I don’t often get to hear about things going well (although this has got a bit better now I am working on more evaluations!)
Once I moved into freelance work, I found the work I did impacted on me even more, probably because I was more isolated, working alone, had less support and had no boss or supervisor.
What helps?
I felt passionate about the work I was doing and I didn’t want to stop. But I could feel myself creeping towards burnout. I was even becoming tearful merely reading about some health topics: particularly when I was working on a project about children with terminal illness.
I realised I needed a plan to help myself.
Here are a few things that made a difference for me:
Getting more support
This started out as organising clinical supervision. This means different things in different contexts, but for me it meant speaking to a counsellor specifically about my work and the emotional impact of it. She helped me establish more techniques to protect myself from becoming overly emotionally involved in some aspects of my work. Over the last few years I have also had a personal counsellor and I see a lovely coach, Tamsin (The Parenthood Coach), who has supported me with lots of work challenges.
I realise I am in a fortunate position to be able to afford this support and not everyone is. If you are working for an organisation, find out if they can help with this: they may already have an employee assistance programme. Additionally, some counselling services offer low-cost or free sessions for those on low-incomes.
Putting on my ‘white coat’
This was a tip from clinical supervision to help me retain some emotional distance from my work. I would imagine myself putting on my ‘white coat’ and getting into professional researcher mode before each interview.
You could set this up for yourself physically as well: perhaps a ritual to mark the beginning and end of your work session? Or simply making sure your work space is set apart from your living space, even if that just means packing your laptop away at night.
Taking breaks
By this I mean big breaks and small breaks. Big breaks could mean making sure you don’t work on the weekends, planning a holiday or day off. Small breaks could be about working in short chunks, I love using the ‘Pomodoro technique,’ which involves working for 25 minutes with 5 minute breaks in between. This is especially helpful when I am working on a difficult topic or complex piece of work.
Changing the atmosphere
I often put on some high energy, upbeat music. Or I literally go and work in a different space, it could be a coffee shop or I am lucky enough now to work in a shared office. Being in a place with other people and having breaks for chats really makes a difference!
Taking time to reflect
After doing a heavy piece of research or a draining interview, I got into the practice of jotting down some reflective notes. I have never managed to keep a proper journal, but even writing a few words about how the work has made me feel helps. Particularly before moving on to other activities.
It has also helped me reframe things and think about positive outcomes from the work I do. Sometimes that gets lost, but I feel privileged to learn a lot from the people I have interviewed, like tips for living and appreciating life even when you are in a very hard situation.
Being kind to yourself
I used to beat myself and be hard on my self about being ‘too soft.’ I often felt that I had no right to feel the way I did.
Now, in reflecting on the impact of my work, I can (normally) give myself a break, and say to myself, ‘it’s ok to feel that.’ I find if I simply acknowledge that something has upset me, and I am kind to myself about it, I don’t normally get so hung up on it.
Also in acknowledging my emotional reactions, I have been able to consider how my own life experiences impact on my reactions to my work. That may be easier said than done, you may need support from a counsellor or supervisor to work through that.
Having boundaries: think about what work you don’t want to do.
As a freelancer it can be hard to say no to new projects. But as I have gone on in my freelance career I have begun to be more intentional about what work I like and what I would prefer not to do. I have now turned down projects where I feel like the work would take too much out of me. And that is ok!
Connecting with others
I have established a great network of other freelance researchers and health communicators. I am collaborating more on projects and it has been lovely to just chat and debrief about work with like-minded people.
Does anyone of this ring true for you? I would love to hear about your experiences and what else has helped. Get in touch! If you want to read more of this sort of thing, why not sign up to the monthly Thoughtful Content newsletter?
Take care of yourself.
Dr Charlotte Gribbin, Aesthetic & regenerative medicine
Working closely with Dr Gribbin to create evidence-based and engaging content on skin conditions and treatments for her new website.: https://drcharlottegribbin.com/
Dr Gribbin said: “Anneliese helped me to create the tone and feeling I wanted on my website. Working with her was fun and productive.”
Assistive technology white paper, the London Office of Technology and Innovation
Leading a research review for the London Office of Technology and Innovation (LOTI) to enable them to better understand and gain visibility of the breadth and quality of existing cases studies available online on the use of assistive technologies. This involved searching published academic literature, grey literature and liaising with local councils to help build a library of assistive technology case studies, a final research report that identified key findings, research gaps and recommendations for future learning. As well as a video presentation and blog to help promote the key findings. This research is already beginning to help change practice within the boroughs by helping AT leads chose evidence-based solutions and create new pilot evaluation projects that build on findings from the existing research.
Feedback from Genta Hajri, Delivery Lead: Digital Innovation
“LOTI was delighted to work with Anneliese on two assistive technology (AT) projects. The first one looked at bettering the understanding of our member boroughs on the breadth and quality of existing AT case studies available online. The second looked at creating a searchable database of more than 120 case studies on the use of (ATs).
We were very pleased with the quality of the research and Anneliese's expertise in this field became apparent from our very early conversations. She was able to clearly and succinctly articulate what would otherwise be very complex concepts. The use of different methods of communicating the key messages, such as show and tells, and reports helped us to reach a range of audiences from frontline workers to decision-makers.
Anneliese was able to translate our project requirements into useful resources for our community of London boroughs, by asking good questions from the start and understanding our needs.
It was a pleasure to work with Annelise, and no doubt we’d be happy to work with her again in the future.”
Newly diagnosed guides, Pancreatic Cancer UK
Re-development of two new booklets for Pancreatic Cancer UK, for people with operable and inoperable cancer. The redevelopment involved extensive user-testing including a survey, one-to-one interviews and at a community group for vulnerable older people in East London.
What was the impact?
Results from the user testing were used to inform content, writing style and design. In particular, use of symbols and boxes to help people navigate through the resource. As well as adding key elements such as ways people can take control of what is happening to them at a distressing and disempowering time.
The charity reported that the new booklets are popular and they have already had a ‘great response’ to them. Work is underway to align other booklets produced by the charity with this approach.
Feedback from Emily Morgan, Senior Information Manager
Anneliese helped us develop two new booklets for people recently diagnosed with pancreatic cancer. We wanted to be able to provide more tailored information to patients, based on an individual’s diagnosis. We also wanted to make the information more accessible, as we knew from previous feedback that patients need the key facts at diagnosis, but too much information can be overwhelming. Anneliese developed the content for both booklets, and also worked with our designers to develop a new design which was more accessible, using features such as symbols to guide people through the information.
She undertook user review with our target audience to make sure the information was clear and easy to use, and also ensured it was engaging and practical, with key facts, questions to ask, and things people can do themselves. We’ve already had a great response to these booklets, and are excited to be able to offer patients tailored information at what is a difficult time.
New web section about cervical cancer, Jo’s Cervical Cancer Trust
Researching, developing and writing a whole new web section (over 20 pages) about cervical cancer. Working with two collaborators information specialist Joshua Cheyne and Health Writer, Kay Dilley to produce within a short time frame. Using a content design approach that included researching user needs and producing evidence based content to answer the questions they may have and problems they are dealing with. For example adding practical tips about preparing for treatment and looking after your emotions.
What was the impact?
Page views increased by around 10% and analytics show that more people are spending more time on the pages and navigating around the section more easily.
Feedback from Imogen Pinnell, Health Information Manager, Jo’s Cervical Cancer Trust
“I approached Anneliese and the Thoughtful Content team to redevelop our online cervical cancer content. I had seen her previous work and knew she could combine the need for factual, transparent health information with our empathetic and personal tone.
Cervical cancer is rare, so can lack the structured guidance and research of other illnesses. I was impressed that Anneliese fully embraced this challenge – conducting a thorough literature review, flagging areas of concern with our team, and offering suggestions for how to fill any gaps with personal experiences from our community.
I appreciated Anneliese’s open and frequent communication throughout, as well as her flexibility in adapting the project plan to a tight deadline."
Life After Transplant: An Essential Guide to Diet and Physical Activity, Anthony Nolan
Reviewing and updating a guide to diet and physical activity for people having a stem cell transplant. Incorporating the most recent research and audience feedback.
Adding evidence-based tips and behaviour change strategies to help people incorporate physical activity and healthy eating into their daily life.
“I commissioned Anneliese on a freelance basis to update our Essential Guide to Diet and Physical Activity. Good nutrition and exercise can be hugely beneficial when preparing for or recovering from a stem cell transplant, so this is one of our most popular booklets.
Anneliese got stuck straight into the task with plenty of ideas on how to enhance and clarify this important patient info. She took user feedback on board and incorporated the findings of our peer review, resulting in a clear and accessible booklet that’s packed with useful info and advice.
Anneliese is completely professional, she met every deadline I set her and went above and beyond to complete this impressive patient resource. It was a pleasure to work with her..”
”
Fertility, emotions and relationships, Mylo
Using the latest research in this area, this blog gives readers practical tips to feel more in control and get support if they need it.
Justice Studio: Why is health a social issue?
Article for social justice research agency, introducing the concept of health inequalities and the social determinants of health.
Live well website, Blood Cancer UK
An innovative new website for people living with and after blood cancer
An innovative new website for people living with and after blood cancer: bloodcancer.org.uk/support-for-you/living-well
Using a content design and behaviour change approach to create bite-size tips and real stories.
Integrating medical and psychological evidence with the lived experience of patients and their families.
What was the impact?
Web statistics showed that the Living well pages were well used since their launch, and the pages continued to be well used. A formal evaluation of the web content showed that after accessing it users were motivated to take action to improve their lives, were more confident to talk to others about their experience and more able to live well as a result of using the pages, feeling less alone and more in control.
Feedback from Abi Howse, Patient Information Manager, Blood Cancer UK
“I brought Anneliese onto a project to develop an online hub of information and resources to support people living with blood cancer. Working with Anneliese was a pleasure and she brought great value to our project.
She produced a comprehensive and helpful research report in the early phases, revealing what it is that blood cancer patients are most seeking online in relation to support and information.
Anneliese quickly got to understanding our audience and added great value in content planning and service design workshops. In particular, she produced extremely helpful ‘content frameworks’ for each topic area in our website, bringing together evidence, user research, content design principles, and behaviour change approach, to make recommendations on the most important content to provide, and importantly, how to provide it (tone, format).
Another part of the project was interviewing people with blood cancer, for research and also to write up case studies/articles, which Anneliese did sensitively and successfully, managing to build good rapports with contributors and draw out their experiences.”
Family information needs, Alex TLC
Producing a report and recommendations on communicating about serious and life-limiting medical conditions to children and families
Producing a report and recommendations on communicating about serious and life-limiting medical conditions to children and families. Insight from research and clinical guidance, as well interviews with health professionals and leading charities.
Medical and social care fact sheets, Crohn’s & Colitis UK
Full medical review, user and health professional consultation, rewrite and update of key medical fact sheets:
Full medical review, user and health professional consultation, rewrite and update of key medical fact sheets:
Children and young people with IBD: A guide for schools
Vedolizumab (a new drug information sheet)