The Patient Information Forum (PIF) recently published a report about the perfect patient information journey. It was launched at a conference last week, with a banner saying: “Patient information is more than just a leaflet”. At Macmillan, we strongly agree. We do have a big range of over 170 booklets and leaflets, but they are only one part of what we offer. In this blog, senior editor Tess shares what we learned at the conference.
The speaker from PIF explained the research, and gave the example of a family member. He was diagnosed with prostate cancer, and she talked us through his patient information journey. At one point, he was given three treatment options. He found it hard to weigh up the risks and benefits, so he was put in touch with patients who’d had the treatments. This helped him decide. We have the same feedback from patients who use our Online Community. It is a place where people:
• share their experiences
• ask questions
• vent their emotions
• find other people who understand.
The rest of the speakers were from other organisations. Some were from charities, some were from private medical companies and some were from the NHS. They explained their role in the patient information journey. We found it very interesting to learn from them and compare the information we provide and how we produce it.
Finding the right format
One of the speakers was from a pharmaceutical research company. She talked about how important it is to have information in a format that is right for you. At Macmillan, we produce our cancer information in lots of formats:
• in print
• online
• in English, Welsh and 17 other languages
• as videos
• in audio
• in easy read
• as videos in British Sign Language (BSL)
• in Braille or large print (by emailing cancerinformationteam@macmillan.org.uk)
• as PDFs and eBooks.
Involving patients in producing information
A consultant from Sheffield Teaching Hospital told us about a project his clinic has run, which empowers people with kidney disease to do self-care (kidney dialysis) at home. He explained how important it was to involve patients in this project right from the start. This made sure they got the information they needed to support them with the self-care.
At Macmillan, all our information is reviewed by people affected by cancer. But we are always interested to learn more about how we could involve patients in producing our information. We were pleased to hear that having the right information meant these patients felt empowered to do their own self-care at home. This is an important part of what good patient information can do.
The patient perspective on the patient information journey
We were very pleased that one of the speakers was a patient, who talked about her own experience of accessing health information. She explained that she was diagnosed with a life-changing condition, given no signposting, and sent home. That experience really affected her, she is now a speaker, writer and advocate on how to talk to health professionals. She thinks it is very important for patients and their doctors to make shared decisions, and she said this is more likely if the doctors know the patient is informed and empowered. We agree that is a key role of patient information, but it is important to get it from the right places. She warned about the danger of ‘Dr Google’ and said it was essential to use reliable, evidence-based sources of information. She also suggested people keep up to date by reading blogs like this one.
Supporting patients to identify information gaps
A research fellow from St Mark’s Hospital in Harrow talked about a project he recently did to identify patients’ information gaps. He held focus groups with patients and listened to their concerns and anything they didn’t understand. He found out they needed more information about:
• when and how to contact the hospital
• how to get information in different languages
• where to find information for people with learning disabilities.
Here at Macmillan, we agree that focus groups are a useful way to find out any questions or information gaps patients have. We run focus groups with people affected by cancer to get their input to some of our resources. This means they can tell us what matters to them, so we can make sure the information covers the right topics, in the right formats. For example, we recently ran a focus group for people who identify as LGBT+ to hear what they wanted from our information.
Updating information to put the patient first
A speaker from the British Heart Foundation (BHF) talked about a recent project her team did to redevelop some of its patient information.
She explained that first they did research into how patients were using their information. They found out that patients knew they needed to make lifestyle changes, such as losing weight, doing physical activity and stopping smoking. But they learned that some patients did not feel able to do it. So the BHF used the patients’ feedback to update all its information about risk factors and behaviour changes. It now gives more practical advice, for example day-to-day choices people can make to have a healthier lifestyle.
We have worked in partnership with the BHF to produce information about the heart. It:
• explains why having a healthy heart is important
• covers the cancer treatments that can cause heart problems, and how these are monitored and managed
• has helpful tips on how to look after your heart.
You can read the information online or order it as a booklet.
Using healthcare apps
The final two presentations talked about the benefits of patients using apps. This can help people with self-care. It can also help them have more regular contact with healthcare professionals.
There are lots of apps available. Macmillan has an app called My Organiser. It is a convenient way for people with cancer to save all their treatment information in one place. It has:
• an appointment planner
• appointment-related advice
• a medication organiser
• appointment and medication reminders
• a contact list.
To see what else Macmillan's cancer information team has been blogging about, please visit our blog home page! You can subscribe to receive our blogs by email or RSS too.
We're with you every step of the way
The Macmillan team is here to help. Our cancer support specialists can answer your questions, offer support, or simply listen if you need a chat. Call us free on 0808 808 00 00.
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