Emma Cartwright and Helen Macdonald: What patients think and how they have changed our practice

“What your patient is thinking”

In 2015, The BMJ kicked off a new series calledWhat your patient is thinking” (WYPIT) with a much discussed article on the language used around weight loss. Since then, the series has brought the patient’s voice and views to healthcare professionals, shedding light not only on what it is like to experience illness, but how healthcare providers can do better to support people to cope with and manage their health.  

The series so far

The series was created by the late Rosamund Snow, who also wrote a WYPIT about her experience of being diagnosed with type 1 diabetes “Bereavement without a death”. We have now published more than 40 articles; mostly written by patients, but more recently by carers too. These have covered many different aspects of care, but common themes include:

The range of health conditions and experiences covered have been equally broad from self-harm, anorexia, and diabetes to cancer and dementia.

Some of the most read articles in the series focus on what it is actually like to be a patient or carer including “Be Brave, “Appointment day—the tip of the iceberg” and “Letting my daughter go.

Learning for health professionals

The vision for the series is to give patients a platform from which to suggest how care might be improved and how to make it more patient centred.

Many of the WYPITs have highlighted the importance of language. We have learned how even mainstream phrases and concepts such as “disease control” or “being brave” can have an impact on self esteem, self management, and coping with difficult experiences.

Some articles have highlighted that some patients, or the public, have an assumption that clinicians have substantial power over the construction and processes of the healthcare systemthough many clinicians may not share this feeling.

Patients have written about powerful examples of the deep and valuable expertise they have to share as partners in shaping their health and healthcare choices, as well as the system. Sometimes in the day to day rush of a doctor’s working day you can lose sight of the need to hear about the burden of treatment, and other important factors in people’s lives which are helping or hindering them in attending to their condition. You can end up treating the condition rather than talking about how to better support the individual who is self-managing it.

Learning for editors

The series has challenged us as editors in several ways. Particularly in finding the balance between sharing an authentic patient voice and in some cases avoiding defamation of health professionals. Another challenge has been how to present calls for change from patients which may be difficult for clinicians to implement. We have tried to ensure that our authors suggest clear learning points on something a healthcare professional could change tomorrow. We have also added reflective questions for clinicians to ensure that these articles are used in creating change.

What next

In the fifth year of the WYPITs series we plan to widen the spectrum of patient perspectives by interviewing patients or carers who may find it hard to write their story or simply prefer to talk rather than write. We are always interested in hearing from patients, or carers, who want to share their story on what it is actually like to live with or experience their health condition, diagnosis, or procedure. Finally, we would also like to hear your views on the series. If you use the WYPITs for learning or teaching, if there are any groups or perspectives you would like to hear about, or whether reading these articles has changed your practice, please do let us know.

If you have a story or experience as a patient or carer that you would like to share, or would like to provide any feedback on the series then please contact the series patient editor Emma Cartwright at ecartwright@bmj.com.