From patient centred to people powered: autonomy on the rise
BMJ 2015; 350 doi: https://doi.org/10.1136/bmj.h148 (Published 10 February 2015) Cite this as: BMJ 2015;350:h148
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In the article I noted that Lucien Engelen of the REshape Innovation Centre in Nijmegen, NL had created an informative visual model showing how the flow of information has changed, enabling all the sociological changes described in the article.
A new, 51 second animated version of the model is now available on my website and on Lucien's LinkedIn blog.
We both hope you'll watch - reader reaction has said that these visualizations really help understand how infrastructure changes have changed what's possible.
Competing interests: No competing interests
Patient peers: “eyes, ears, and a voice that they’ve never had before. These are the precursors of autonomy, emancipation, and self determination.”
Yes I agree wholeheartedly with these words and the exhortation from Dave deBronkart in his refreshing Spotlight piece. It’s what I’ve had to do since becoming an unpaid carer for sons experiencing mental health difficulties who had no choice but to engage with an under-resourced psychiatric system and on occasion face “unreasonable treatment” (as described by the Scottish Public Services Ombudsman upholding my complaint against NHS Fife in September 2014). My own experience of recovery from mental illness and psychiatric treatment equipped me for the advocacy role.
I’ve also had to become a writer and blogger (1), an activist and campaigner, to have a voice and influence in the places where decisions are made. Some might describe my involvement as being like a hair shirt or the unwelcome guest at a party. Critical or questioning voices are not often welcome.
However the upside of my campaigning has been the forging of alliances with medical professionals, on level playing fields, with shared aims and life experiences. One of these partnerships is with Dr Peter J Gordon, Consultant Psychiatrist, who is petitioning Scottish Parliament for a Sunshine Act: “creating a searchable record of all payments (including payments in kind) to NHS Scotland healthcare workers from Industry and Commerce”. (2)
Dr Gordon and I are in regular contact, working together, exchanging information, helping to foster transparency and ethical practice in the relationships between drug companies and health boards. Having been a community development worker for over 30 years I am now finding empowerment in our knowledge transfer and in the act of writing to be heard. A reciprocal agreement based on mutual respect.
References
(1) Chrys Muirhead Writes:
http://chrysmuirheadwrites.blogspot.co.uk/
(2) A Sunshine Act for Scotland, Petitioner Peter John Gordon:
http://www.scottish.parliament.uk/GettingInvolved/Petitions/sunshineact
Competing interests: No competing interests
I wish I could wave a magic wand that would ensure this article is used in all medical education.
A seasoned patient activist, I attended my first conference, 'Patient Empowerment', in 1994 and dared to hope there would be change. Since then, I have often related to the feminist movement as I encountered endless resistance to the patient voice from a paternalistic NHS. 'Patient Empowerment' was commuted to 'Patient Partnership' after a year, the former seemingly too challenging for Medical Might, but an unofficial patient movement began to emerge. A colleague, Charlotte Williamson, was prompted to write: 'Towards the Emancipation of Patients. Patients' experiences and the patient movement' (Policy Press, 2010).
The cancer support group I ran (the only one in the area) offered high standards of support and information and won two awards, yet hospital patients in the 1990s were told there were no support groups available, such was the medical need for control and 'ownership' of the patient. One breast cancer patient was told not to talk to anyone about her cancer and so isolated herself for two years. By the time she located our group she needed psychiatric support.
I'm now one of those 'frail elderly with multiple co-morbidities' often referred to in journals, so the occasional hospital visit is almost inevitable. Within the last two weeks I have had both negative and positive healthcare experiences: the attitudes expressed in the first left me shaking with outrage, so that I felt bound to write a rapid response to Rosamund Snow's article ' Do you know what your patient is thinking?'; in contrast, the second appointment was with a consultant who treated me like a human being - and arranged a follow-up telephone call from one of her team to ensure the patient pathway is on track, scans will be timely and support will be offered in case of need. How good to know some clinicians are moving ever closer towards patient-centred care.
We need innovation to change the status quo, which should in turn lead to changed attitudes. This article should help oil the wheels very nicely.
Thank you, Dave.
Competing interests: Author, Nothing Personal, disturbing undercurrents in cancer care. Radcliffe Publishing.
This is an outstanding article.
I refer to myself as a research "Hound" so I can relate to the bloodhound reference in the article. I have read hundreds of research articles related to ovarian cancer since my diagnosis almost 10 years ago. They have been valuable at various times but especially when I recurred 5 years ago. I used what I learned from research articles on secondary cytoreductive surgery for an ovarian cancer recurrence when I discussed my treatment options with my gynecologic oncologist. I chose surgery then chemotherapy.
My gyn-onc and I are a team treating my illness and I appreciate the many discussions on new treatments, clinical trial design and carboplatin allergic reactions we have had.
Competing interests: No competing interests
A collaborative, respectful partnership between patients and doctors is mutually beneficial. Knowing doctors do not have time to read every research article relevant to their specialty nor do they have the time to ponder the subtle presentations of each case, I take responsiblity for knowing my own case well, along with various risk factors.
In one instance, a diagnosis had been overlooked relating to my central line. Severe back pain was assumed to be the result of an injury. What I discovered as a likely differential diagnosis was discitis/osteomyelitis due to a poorly done (non) sterile dressing change of my PICC line. Turned out to be a coagulase negative staph infection, revealed on an MRI which I requested.
My doctor, who is a phenomenal partner to me and champion of mine, asked how I had come to this possible differential. Grinning, I said, "well, unlike you, I only have one patient and I'm pretty fond of her so I took the time to ponder other explanations for the back pain."
One week later, another patient presented with similar symptoms. An MRI was done immediatley with a similar result. Saved the other patient's life, preventing possible paralysis. Got a "thank you" note from my doctor.
There is a revolution in the EVOLUTION of the doctor/patient relationship. Collaboration between doctors and patients protects EVERYONE and builds trust.
Competing interests: No competing interests
Erratum
As the author, I apologise for a transcribing mistake (apparently minor) in my quote from the AMA 2001 advisory at reference 1 http://www.bmj.com/content/350/bmj.h148#ref-1. The article says "Only your physician has the necessary experience and expertise to diagnose and treat medical conditions. Trust your doctor, not a chat room." The source PDF at that link clearly says "Only your physician has the necessary experience and expertise to diagnose and treat medical conditions. If you have questions, trust your
doctorphysician, not a chat room."I have no idea how I got it wrong, since I'm the one who submitted the source!
Competing interests: No competing interests