Rebalancing the patient and the system

Many argue that focusing more on the patient and less on the clinical process would bring improved satisfaction for both doctors and patients and reduce unwanted side effects.

Patient focused care is very much in vogue across many hospitals, in some GP clinics and in a minority of specialists across the global. The British Medical Journal in particular and a number of other medical journals have published numerous articles dealing with patient centricity and patient advocacy.

Clinicians are advised to consider the patient’s wishes, to speak plainly and to spend time understanding the patients’ perspective. Indeed, some do but for the majority the structure of the system itself works against them.

Hospital clinicians are still rushed off their feet, GP’s have to run an average 10-minute consultation window in order to be economic and few of these experts actually deal directly with Allied Health providers even though team care arrangements are funded in this country.

The hierarchical nature of the system tends to isolate Allied Health practitioners and underutilises nurse services to the patient, particularly for follow-up. The net result are patient friendly explanation pamphlets and a cheery “come back and see me if you need” comment.

Patient centricity operates across a continuum illustrated below with the left-hand indicating the current environment (green circle) and the right, where additional opportunities exist.

Common practice is for the patient to go to the service provider, usually the GP. The reverse is rarely true except for the aged or where the fee structure makes it worthwhile. So, sitting in a room with other ill people is the norm.

Why should this be? Why should a mother with three kids have to stress her day to fit in with the doctor, especially is she is paying full fee? Why should a man with a major musculoskeletal condition limiting his mobility be forced to struggle to a waiting room?

This is not patient-centric service. Why shouldn’t a patient who knows their condition inside out be involved in planning their own treatment?

Shared decisions for diagnostic decision making is a key area. In 2001, the National Academy of Medicine in the UK set out its vision to prioritise patient centred care: to ensure that clinical decisions “respect patients’ wants, needs, and preferences and that patients have the education and support they need to make decisions and participate in their own care.”

Ideally this is about a collaborative and iterative process between clinician and patient and often with carer giver/family as well. The patient’s overall goal of care is produced via a discussion with clinician and designed to agree on a patient centred diagnostic plan.

A recognised outcome of this process is to minimise treatment side effects and adverse drug interactions. This process is probably most often used for cancer and diabetes treatment, but few other patient conditions have ever been exposed to the process in a sustainable manner.

Patients are increasingly in a position to monitor their own symptoms, update the doctor electronically and work up a plan for better wellness involving a range of strategies from drugs to diet with support from a range of allied health providers including nurse educators and online tools.

This is slowly happening as patient IT literacy increases. Where this fails is that few clinicians will use the data generated by the tool at the consultation.

There are around 950 self-care smartphone apps available. Most are fairly simple, but the sector is growing in complexity and usefulness. Importantly, patients and IT professionals are taking charge and not waiting for the ponderously slow health agencies to act.

These new service providers are producing new and innovative patient centric phone apps. In 2016 this was the case for diabetes, by a movement called #WeAreNotWaiting.

This groups use of current medical devices, updating the software to produce solutions ranging from remote monitoring to producing the ability to automate the management and monitoring of a patient’s condition.

The Australian group associated with rheumatoid arthritis called Dragon Claw is on the verge of releasing a smartphone app which will warn users if their condition deteriorates. Another group ripe for patient activism and patient centric IT solutions is the Parkinson community.

This community has used considerable patient demand to produce the Linked Clinical Trials program designed for the repurposing of drugs.

I am not advocating patient centric activity isolated from the clinical world. There is great value in clinician–patient collaboration. Such collaboration is undoubtedly necessary to reach the mutual goal of optimising patient care and clinical outcomes, education and self-management.

The science and knowledge are necessary for moving forward. The real source of strength, however, and potential for change draws inspiration from patients. Some clinicians think that they can relegate the patient to be a passive recipient of health care, but they fail to realise that we are all patients sooner or later and many want to be actively involved in their own well being.

As Dr. Tessa Richards said in her blog on patient involvement in global research for the British Medical Journal in November 2017 “The ethical imperative to involve patients and the public in research that they directly or indirectly fund, and which is carried out on them in their name, is widely accepted.

“There is also a growing consensus that their involvement is one of the key ways of increasing the value and reducing waste in the biomedical research enterprise. Furthermore, there is evidence that co-producing research with patients and the public provides an appreciable “return on investment.”

Readers looking to explore the expanding role of the patient in research may be interested in these videos on expert patients and the role of emotions, therapeutic innovation and patient education and the importance of science in patient advocacy.