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Feature Essay

Shared decision making: why the slow progress? An essay by Neal Maskrey

BMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6762 (Published 05 December 2019) Cite this as: BMJ 2019;367:l6762

Rapid Response:

Re: Shared decision making: why the slow progress? An essay by Neal Maskrey

Dear Editor,
Forearmed is forewarned. Competitors in the Brain of Britain go into the competition primed to know as many answers as possible in order to succeed. Patients who have access to their records utilise the same strategy and read their own notes before tackling the assault course of information overload at a short emotional and intense consultation aimed at decision making. With a shortage of 15 million health workers worldwide and 4.78 billion mobile phones patients and information remain underutilised resources in Universal Health coverage.

I quote Oliver Crowton from his recent letter published the BMJ in response to the recent editorial on ‘Implementing Person Centred Approaches’, (BMJ 2017;358:j4126).

I read with interest the recent editorial on ‘Implementing Person Centred Approaches’, (BMJ 2017;358:j4126). I must first of all clearly state that I am neither an academic nor a health professional, I am a builder. A builder with a chronic disease (Ulcerative Colitis) that I have lived with for the last 5 or so years.
I am also aware, to an extent, of the pressures facing the NHS and the medical profession. Only what I see in the hospitals that I visit and hear through mainstream media channels, but enough to understand that to succeed the system needs to evolve and I think that the person centred care approach is a positive step.
It is encouraging to hear of building communication and relationships between healthcare professionals and the people receiving care as this can surely only serve to improve engagement and mutual understanding. (The healthcare professional’s understanding of the patient and the patient’s understanding of their condition/treatment).
I do however feel that in an organisational and system context (as well as a patient context) the article neglects to acknowledge an extremely valuable tool, that of the ability to share patient data. I refer not only to the appropriate and controlled sharing of patient data within and across relevant organisations which has its own merits, but also and importantly the sharing of patient data directly with the patient to which it relates.
During the years following my own diagnosis my relationship with my healthcare professionals (doctors, nurses and consultants) has quite suddenly and accidentally become more ‘patient centred’.
Two years ago I was at a stage in my understanding of my condition and treatment that was so limited it placed the entire weight of responsibility for my care on the doctors treating my condition. At that point in time I had lived with my diagnosis for three years and I was a passenger, along for the ride feeling I did not have a part to play.
Quite by chance I was then offered the opportunity to sign up for digital access to my records through ‘Patient Access’ by EMIS.
I have found that access to my medical data, including test results, consultation details, diagnosis history etc. has empowered me as a patient and given me a platform for the sort of communication with my healthcare professional that Person Centred Care appears to seek to achieve. I ask questions, discuss options for treatment and associated side effects, as well as assisting with the management of my regular scheduled treatments. I am able to feel a better level of care with less contact with the surgery. I can manage prescriptions and view test results without the need to take up time talking to the surgery staff. I can review treatment dates to ensure that my blood tests and treatments are scheduled appropriately without the stress of wondering when they are due. The access to EMIS has allowed me to take some ownership of my condition and work pro-actively with my various healthcare professionals in the management of my disease and its treatment both short and long term.
I have no doubt that I would not have had the confidence required to begin discussions with my doctors without the access to my records as a basis for communication.
I find the quarterly visits to my Consultant at hospital are also now far more useful. I am able to discuss the results of my GP surgery visits and test results and draw directly upon them at the consultation from my smartphone if required, adding depth to our discussions.
In short I am no longer a passenger, I am now very much part of the management team for the effective treatment of my condition and I am pleased to say that I am managing to remain in good health.
I understand that not everyone will have the capacity to use their data in this way but there are very many who will and I can see access to patient data being a very powerful tool indeed in achieving patient centred care.

Competing interests: No competing interests

15 December 2019
Richard Fitton
Retired GP
patients
The Old Vicarage, Crowden, Glossop Derbyshire SK13!HZ