Patient diaries
A patient diary is a way to capture people's real-time experience of using health and social care services.
Patient diaries are valuable tools for understanding people’s needs and shaping more person-centred care. They can be written or recorded by a patient, caregivers, or healthcare professionals depending on the context.
There are different types of diaries, depending on the focus:
- Experience (patient) diaries are used to understand experiences across a care or treatment journey to highlight what matters most to the person.
- Symptom diaries track health symptoms, and may be completed by patients, carers, or clinicians.
- ICU diaries document a patient’s condition and experiences in intensive care, often written by caregivers.
Why use patient diaries?
- To Consult and Involve individuals
- To understand real-time experiences.
- To generate alternatives.
- To hear from underrepresented groups.
What is required?
- Duration: The length of time the person records their experiences should be agreed collaboratively between you and the individual.
- Number of participants: This should reflect the scope and aims of your project. Smaller numbers may be appropriate for deep qualitative insight; larger samples may support broader pattern recognition.
- Equipment: Choose a format that suits the person’s preferences and accessibility needs:
- Paper diary or notepad
- Digital tool or app
- Voice notes or video entries (if appropriate) - A consent form may be required, especially if the diary content will be shared, published, or used for evaluation. Ensure patients understand how their data will be used and stored.
How to do it
Step by step process:
- Define engagement purpose by clarifying what insights you want to gather and how they will be used.
- Recruit participants by identifying and inviting a diverse group of people who have relevant experience.
- Agree diary focus with each participant. What will the diary be used to record?
For example, symptoms, emotional responses, or service interactions. - Ensure consent by explaining how recorded information will be used, and agree timeframes.
- Begin using diary and supporting the person to consistently record entries.
Check in regularly and provide any additional information needed. - Analyse themes by collating entries anonymously and identifying key insights using qualitative methods.
Consider what the key insights tell you about the service and what you might learn from the person’s experience. - Share findings with participants and staff to inform improvements.
Feeding back resulting changes or improvements empowers participants and creates trust. - Review learning regularly to embed insights into ongoing improvement work.
Tips
- Keep it simple – Use notebooks or sheets with clear prompts.
- Use and encourage plain language – Avoid jargon and encourage the person to record experience in their chosen language.
- Offer formatting options – Paper, digital, or creative methods, such as photos, drawings and audio can support people to record their experience in a way that suits them.
- Discuss key questions or prompts together before starting – This helps the person to reflect more deeply.
- Include others, if agreed, for example relatives or caregivers .
- Check in regularly, by asking how the diary process feels, if the person would prefer an alternative format, or would like anyone else to contribute to the diary.
- Celebrate contributions by acknowledging the value of the person’s input.
Advantages
- Can be tailored to suit each person’s needs, preferences, and abilities.
- Enables people to share their thoughts and experiences in their own words and preferred language.
- Participants decide what to record, how, and when, giving them ownership over their story.
- Can reveal meaningful insights by providing a deeper understanding of how people feel about their care and how services work together from their point of view.
- Supports person-centred care by using real-time experiences to inform change and improvement processes.
Disadvantages
- Insights are likely to reflect individual experiences and not the wider patient population, so looking across multiple diaries may be needed, or considering other feedback to add to the broader picture may be needed.
- Without a clear scope or purpose, entries may be too broad or lack relevance.
- Relies on patients having the capacity and commitment to consistently complete entries over time.
- Analysing diary content meaningfully requires time, skill, and capacity, which may be limited for some.
May be used alongside
More information
Implementing 'patient diaries' within the Intensive Care Unit - Turas Learn