How the e-patient community helped save my life: an essay by Dave deBronkartBMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f1990 (Published 02 April 2013) Cite this as: BMJ 2013;346:f1990
All rapid responses
"Let patients help improve healthcare. Let patients help steer our decisions, strategic and practical. Let help patients define what value in medicine is."
Congratulations on a well written article which really describes very eloquently how patients (and their carers) can be a resource that healthcare establishments can really benefit from too.
It is lovely to hear about value from the eyes of a patient and not necessarily in terms of crude measures we may use for outcomes and costs and rather the benefit of networks and communities that are vital to support delivery of high quality, safe care. This needs to become the language that we all speak about and take a greater interest in even though this can be hard to quantify.
I would like to share with you 2 patients from here in the UK who have also described their experience to help others to benefit too. Alan Yates was a patient of ours with prostate cancer who wanted to raise awareness of his own predicament so that others may learn too.
Unfortunately he died but he made it clear to his family that he wanted others to continue to learn so that they may benefit too from what he had learned.
Gill is another patient of mine who presented with me at the Grand Round at the Christie hospital in Manchester - a world-renowned cancer hospital and her own experience of breast cancer treatment.
Patients need their data and we all need to work towards enabling patients and carers to be given their data responsibly. They also need information to help them make sense of that data too within a trusted environment. Clinicians and organisations also have a responsibility to help patients to understand their data and increasingly we will need to do this through a variety of means using the consultation, families, peer networks and perhaps increasingly social media too.
Changing patients, clinicians and organisational behaviour is not easy in the current climate especially when the challenge is not well understood. However here is the latest data at our own practice showing how many patients here in the UK inside the NHS have been enabled and activated.
Here is a great interview by Dr Richard Fitton, anther GP who was interviewed with his patient on the radio talking about the merits of sharing the medical record with patients too.
We are not alone. Renal Patient View has also shown how patients in a secondary care setting (www.renalpatientview.org) are also benefiting from this way of working together with their clinicians, managers and IT support teams too.
And here is a great book entitled "Against All Odds" written by a father and daughter about his experience of what happened when he suddenly fell ill and incapacitated.
Of course patients can do so much more than just view their records and more and more online tools will be made available which can enhance the patient / clinician experience.
There are still many challenges that we face but thankyou for sharing with us your own experience. I hope through these experiences many more people choose to come forwards and not see patients as a threat but rather as an opportunity to help us all deliver better outcomes for all!
We have much to learn from each other and in so doing help to demystify some of the complexities of medicine whichever part of the world we happen to live in.
Competing interests: No competing interests