Finding common patterns in long-term conditions

In our user research we look for common patterns in the patient experience. Our interview subjects had been diagnosed with either type 2 diabetes or mild to moderate anxiety & depression (MMAD).

Patient experience map

Patient experience map

Patient experience maps show the experience of a condition, a typical journey through health – from a patient’s point of view.

Similar to customer experience maps, there are many examples out there, including a GDS user research blogpost Researching and mapping your users’ current experience.

Patterns in the data

Our maps grew out of hours of interviews, transcribed, sorted and filtered. Hinrich has described how we used these data to create our set of user needs.

The maps show touch-points – moments where the patient interacted with the NHS. We’re looking for general patterns. For example:

  • an initial consultation with GP.
  • a blood sugar test with diabetes nurse.

They also show the wider story – important moments, where NHS professionals were not present:

  • patient Googled side effects of metformin
  • patient’s aunt goes through their kitchen cupboard, removing foods with refined sugar.

Typical phases:

1. Before:  A time before there are (noticeable) symptoms.

2. The Trigger: An event that leads to a person seeking help – either recurring symptoms or a sudden surprise.

3. Help-seeking: The moment someone tries to access care. We found barriers that discouraged, and nudges that led towards care.

4. Diagnosis:  When someone learns the details, and implications, of their condition. Perhaps tests and a consultation. Participants commonly described:

  • feelings of shock and denial
  • a short GP consultation, with little time for questions
  • difficulty in recalling the explanations or advice given
  • a gap before they received further help

5. Learning: Initially, people looked for usable, practical information but were confronted with a high volume of information, with new language to understand.

For type 2 Diabetes we found the first 6 weeks contained the steepest learning curve; some kind of stability emerged around 100 days.

6. Treatment: For example, a prescription or referral. People had new experiences, e.g. with medication, further questions, e.g. about side effects, and more to learn about their treatment options and how treatment worked. They also had to go to new locations and meet with new health care professionals.  

7. Behaviour-change: We’ve met people with a range levels of activation. Some were strongly motivated to improve their health, others less so.

Over time we found diminishing curiosity and motivation. People who’ve lived with conditions for a few years were less motivated to change their behaviour

8. Support: People looked for, or were given support and information from a variety of people: directly from GPs, consultants and other professionals, from their partners, extended family, or friends. Many looked online for health information. They also came across leaflets in waiting rooms, actively bought books, were gently taken or went to support groups. Others stuck their heads in the sand.

9. Monitoring: The lives of our participants continued – with regular tests and reviews woven into their everyday lives.

10. Progression: People learned to manage or live with long term conditions to varying degrees. Our type 2 diabetes participants needed to be aware they had to  to check for the related complications as the disease progresses.

How can these findings make things better?

We aim to:

Go beyond a list of things people need to do – we know where they’ve come from, and what they need to do next. We can design solutions in context.

Design for the patient journey – what you need to know and do changes over time.

Step away from the clinical, organisational or commissioning points-of-view – adopting the patient’s perspective opens opportunities for more holistic care.

Join the gaps – at the moment the patient is the integrator, doing the work of connecting different systems and re-telling their story as they move through the system.

Support patients between face-to-face encounters, so they never feel lost or abandoned.

Next

We know we’re not alone in studying the phases of long term conditions. We’re interested in hearing of others working, either in the clinical or digital areas. Let us know what you think.

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