Setting clear goals and making use of both newly-diagnosed and expert patients from a variety of backgrounds are key to involving users in developing health information, according to expert speakers at PIF’s event on the topic, which took place on Thursday 27 June 2019.
Common themes on meaningful user engagement emerged from projects across the UK, from those working to increase health literacy, embed shared decision making and produce disease specific information.
Key messages from presentations and the event’s practical session included:
- Find out what your users need right from the start of development
- Don’t assume – ask
- Give users more than one way to engage in testing and feedback
- Consider how to reach recently-diagnosed patients or those with no knowledge of the condition, as well as making use of ‘expert patients’
- Allow users time to consider what questions they might want to ask
- Let users know the value of the tasks they have completed
- Ensure everyone in the organisation understands the importance of shared decision making
- Avoid lengthy text by using visuals or interactive content
- Make use of tools which assess the ‘readability’ of information
- Involve users throughout the development process – don’t just present them with a final draft
PIF’s event Chair and Non-Executive Director, Anne Ballard, summarised: “It is not what is the matter with you, but what matters to you.”
The biggest issue for anyone writing health information is thinking about who you are writing for, said Mike Etkind, Volunteer Panel Member at Healthwatch Bucks.
“I strongly feel that the best time to engage people is when you are thinking of doing some sort of communication,” he said. “You are the expert in the subject, not in receiving information on that subject.”
Despite potential difficulties in getting people to engage, Mike emphasised the importance of trying to include newly diagnosed, as well as ‘expert patients’ in developing health information.
“In the same way that people become experts in their field, expert patients have an entirely different perspective,” he said. “Someone newly diagnosed will want to know all sorts of thing that the expert patient will already know.”
In 2018, Healthwatch Bucks ran its Crystal Clear project looking at how easy it is for patients and the public to read and understand important health and care information.
Mike suggested one easy way to make information leaflets and documents clearer is to run text through ‘readability’ programmes. This is a simple way to flag up overly long or passive sentences and gives writers clear guidance on how to improve.
Women’s Voices Involvement Panel
A user panel with a membership of 600 is helping to ensure women are at the heart of everything the Royal College of Obstetricians and Gynaecologists (RCOG) does.
Women’s Voices lead, Kate Brian, described how members are asked to inform the curriculum and feed into the development of patient information and guidelines.
“We always see patient information as a work in progress,” she said.
Kate spoke about how the RCOG had worked with campaign groups to provide new information, including on the hysteroscopy procedure.
“The advice we were giving was that it could cause ‘discomfort,” she said. “But the Campaign Against Painful Hysteroscopy contacted us and said for a minority of women it could be excruciating and the guidance was not preparing them.”
RCOG worked with the campaign group to produce new guidance, including a woman’s right to ask for the procedure to be carried out under general anaesthetic.
Involving users in the development of health literate decision support resources
Around 40% of patients are not as involved in decisions about their care as they want to be according to the Care Quality Commission (CQC).
Pauline Grant, Deputy Policy Lead – Health Literacy and Shared Decision Making, Personalised Care Group, NHS England, spoke about why shared decision making is so important.
In the wake of the Montgomery Judgement she spoke about why people need access to all the information – not just the benefits but the risks and also the potential outcomes of doing nothing.
“Patients are experts in themselves,” she said. “What is important to them, they are experts in that. They need the information and support to be able to make the decision on what is right for them.”
She said the CQC figures showed there is often a miscommunication between ‘what professionals think patients want and what they actually want’.
Pauline outlined four key foundations to shared decision making:
- Supportive systems and processes at every level of the organisation
- Training entire teams rather than just individuals
- Thinking about how services can be commissioned differently
- A prepared public
Preparing the public included the It’s OK to Ask campaign, which encouraged patients to think of questions they wanted to ask before consultations. While not designed to replace a health-literate conversation, evidence from MAGIC showed they could be an important enabler.
Pauline also shared the Health Literate Decision Support Framework, developed in collaboration withthe Patient Information Forum and the Community Health and Learning Foundation, a step-by-step guide on how to create a health literate resource. Testing in Nottinghamshire showed huge enthusiasm for providing health literate resources. However, guidance on how to use the framework is needed and people find simplifying complex information a challenge.
Patients as Partners
Shine Cancer Support was set up exclusively to support people in their 20s, 30s and 40s who have experienced a cancer diagnosis.
Founding director Ceinwen Giles was diagnosed with Stage IV non-Hodgkin lymphoma six weeks after her daughter was born in 2009. She found much of the information available was aimed at older patients and support groups were mostly held during the day when people her age would be at work.
Along with co-founder Emma, Ceinwen set out to find out what people their age with cancer actually needed.
Putting her background in international development to good use, she applied Participatory Learning and Action (PLA) techniques to younger adult cancer patients through an online survey, interviews and feedback sessions.
From this, Shine developed six themes on which to base its work: living with uncertainty, fertility, working after cancer, finances, relationships and dating, and caring for younger children.
“We really believe that you have to always be community led. I think it also pays dividends in the responses you get,” said Ceinwen. “If people really believe that you care about them and want to get to know them, they are much more willing to give their time.”
Each year Shine holds an annual conference – Shine Connect, which is shaped by users. An initial Facebook survey asks what topics should be covered with results reviewed by Network Leaders and regular volunteers. Experts from both inside and outside the Shine Community are then recruited to speak. Participants are asked what they would like from sessions when they register and once the conference has finished it is evaluated to see what worked.
In 2019, 100% of people rated Shine Connect as good or fantastic.
PIF Projects and Partnership Manager, Sophie Randall, ran a practical session to find out what PIF members want to know about involving users.
Everyone was invited to write one issue on a piece of paper and it emerged the answers could be grouped into five main themes:
- General engagement
- Digital tools
- Hard-to-reach groups
- Barriers to engagement
Member-led focus groups then discussed how these issues could be overcome and presented their ideas.
A key theme was trying to build long-term relationships and trust. Involving community leaders, local support groups and frontline staff was seen as vital.
Emphasising the impact of high quality information, rather than ‘just trying to get people into a room’ was seen as a good way of overcoming time barriers – not just to encourage users to give up their time but also when emphasising the importance of consultation to your organisation.
Another key point was the value of existing participating users and volunteers. Sharing their stories of how engagement led to a positive outcome could encourage others or they could train reluctant users in digital tools.
Using digital means of engagement was also flagged by participants, particularly for those who could not attend focus groups. While focus groups are of value they need to be managed carefully to avoid dominance by vocal participants or those with a specific agenda. In depth interviews could provide real depth of patient experience and identify unmet needs.
When feeding back to users on how their contributions have been used it is useful to explain the role of evidence-based information in the production process.
All the issues raised were collected by PIF to help inform our guidance and future events.
Working with your target audience
The Motor Neurone Disease Association is working with users to develop new information and events.
Care Information Manager, Kaye Stevens shared how it has come close to co-production with several projects and its default position is now to engage before, during and after development.
This approach has seen it develop a new eating and drinking guide following feedback from patients, new information on Kennedy’s Disease and a cooking day.
Following on from the theme of engaging both experts and non-experts, the development of a young person’s guide included consultations with young people who had experienced MND in their families, but also a full school year group to highlight what someone encountering MND for the first time might want to know.
Kaye emphasised the importance of overcoming the barriers we put in our own way to engagement and considering new ways of gathering information.
She ran a live interactive demonstration of Mentimeter, a cloud based-solution which allows you to set questions and get immediate answers from people using their phones.
Kaye also encouraged members to think about alternative ways of getting support and funding, for example working with local businesses and universities.
“Make use of your outlying community to take care of your target audience community,” she said.
Developing user research to enhance our approach to involvement
NHS 24 has created a designated user research function to enhance its approach to user involvement.
User researcher, Chris Begg, quoted designer and technologist John Maeda who said: “User experience used to be the seasoning you’d sprinkle for taste; now it’s the flour you need at the start of the recipe.”
Chris used to tackle both engagement and research without specialising in either. His role was to raise awareness of health information based on what they assumed users needed. NHS 24 realised it needed to split the role into two different functions so each could be a specialist area. This is where the user research function came into play – identifying a user need, rather than a want or a ‘need’ based on assumptions.
A need is something you have to have, for example, needs a service must satisfy for the user to get the right outcome. A want is something you would like to have.
“We as NHS 24 have evolved from developing health information based on our assumptions, to developing it based on a user need/request to now developing what they want based on an actual need,” said Chris.
Acknowledging some of the barriers to user research, he said it was important to persuade peers of its worth and reject the idea that we already know everything about our users.
“When designing a service always start by learning about the people who will use it,” he said. “If you don’t understand who they are or what they need from your service you can’t build the right thing.”
There are more than 1,000 GP surgeries in Scotland but around 40% of them do not have a website. NHS 24 is currently developing new websites, just about to be tested in surgeries. Chris demonstrated the difference between an initial idea of what they thought patients wanted and the beta site after testing, demonstrating how projects can evolve through user feedback.
PIF is grateful to all speakers and attendees for a really insightful day.
Posted on Tuesday, 02nd July 2019