Disclaimer: thought bubble alert – this is a bit of thinking out aloud as I work through some ideas about personalised care versus systemic change in health care. So here it goes.
Whole person care is elusive both in definition and implementation.
The definition of whole person care articulated by Hutchinson focuses on the distinction between the healthcare worker being focused on ‘curing’ the patient and ‘healing’ the patient. Yet this is only one of many attempts to address the progressive depersonalisation of medicine and healthcare. When I trained these problems were discussed in relationship to the biopsychosocial model of healthcare. Patient-centred care is probably the official term for a more personalised approach to medicine despite the parallel development of the whole person care movement. Another group refers to integrated models of care. No doubt the advocates for each of these models of care draw distinctions between their definitions and goals, and also different parties (patients, nurses, physicians, and healthcare systems) claim ownership of delivery of this care. Ultimately these distinctions do not help advance the cause at a scalable level.
The Institute for Healthcare Improvement has proposed the Triple Aim:
– Improving the patient experience of care (including quality and satisfaction)
– Improving the health of populations, and
– Reducing the per capita cost of health care
The Triple Aim provides a potentially useful framework for considering the implementation of whole person care. Whole person care does attempt to improve the patient experience of care but arguably the degree of one-on-one care suggested by whole person care is not achievable if the healing and curing is to be delivered by the same individual. Even with the growth in heatlhcare as the top employer it is unlikely that enough healthcarers could be trained and employed to provide ‘perfect’ whole person care and reduce the per capita cost of health care.
In this regard I would suggest that we view whole person care from a systems perspective and from the perspective that by introducing systemic change that is oriented to the whole person the Triple Aim could be satisfied.
In a systems approach we could hypothesise that although the ideal might be completed personalised care that there are common values, albeit with cultural variation, that could serve as the basis for interventions that effectively enhance whole person care or patient centre-care but built around change that can be made across systems rather than through training and enculturing of individuals.
Early discussion of a palliative approach may reduce unnecessary admission to intensive care, attempts at resuscitation and other inappropriate care at the end-of-life. Dignity therapy (Chochinov) can improve quality of life and reduce distress and depression. The minimally disruptive medicine approach (Montori) could ultimately translate into reduced use of face-to-face consultations or presentations to emergency care. Minimally disruptive medicine is concordant with our research which has shown that patients with a new diagnosis of cancer, who aren’t immediately terminal, desire normalcy.
So perhaps, there are values, like the desire for normalcy, that can drive system changes to improve the quality of health care but also meet the requirements of the 3rd of the aims, reducing per capita cost of health care. Values of importance could include all of the attributes of patient-centred care as described by Berwick: transarency, individualizaton, recognition, respect dignity and choice in all matters, without exception, related to one’s person, circumstances and relationships in heatlhcare.
The key in taking this approach is striking a balance in the weighting between the ‘values’ recognised by the system i.e. cost, occasions, of service, and sometimes arbitrary metrics of quality, and actual perceived quality of care as described by patient reported outcomes. The current system, specifically in relation to pharmaceuticals, but other aspects of health care, over-rewards in financial terms for small gains in cure and and under-rewards, or possibly doesn’t reward at all, any gains in healing. Health care , cannot only be defined by economic measures and so we should acknowledge that there needs to be some leeway in aligning and balancing economic value with value for the individual – it may be that we can deliver both.
One of the emerging movements in healthcare is the quantified self movements. Led by a bunch of tech-savvy self-confessed geeks the quantified self movement is all about collecting personal data and using it to inform life decisions, health care decisions and behaviour change to improve overall well-being. These life-loggers are measuring their habits, food intake, activity levels, mood, heart-rate, blood pressure, blood sugar and a host of other person-reported outcomes and physiological measures and charting them on paper or in spread sheets. Whilst this seems like a small sub-culture most people with smart phones have downloaded at least one health related app that can be used for life-logging. Persistent use is not always durable and perhaps it is because life-logging, like much other healthcare activity is burdensome. You have to spend a lot of time entering data yourself. Well maybe this is all starting to change and being a quantified self is becoming less burdensome.
Victor Montori has been advocating for minimally disruptive medicine, the aim being to reduce the overall burden of healthcare (not just the burden of disease) for patients, particularly those with chronic medical conditions like diabetes. Many chronic medical conditions actually already require individuals to include some form of life-logging as part of their healthcare routines e.g. recording blood sugar levels or blood pressure.
Smartphones and other smartphone facilitated devices are starting to enable data collection in a minimally disruptive way. For example accelerator and GPS-enabled smartphones, or smartphones linked wirelessly to other small devices like a Fitbit or a Nike Fuelband, can track exercise and other activity levels. Calorie consumption can be inferred and flights of stair counter. The same phone or added devices can be used to measure sleep patterns. Increasingly attachments to the phones can measure various physiological parameters in a non-invasive way. Apart from the occasional re-charge (they aren’t solar or movement powered yet) they are pretty much plug & play, set & forget. All you need to do is make an effort to check out the data in the form of customised reports and decide how you will act on them.
To take it a step further companies such as Soma Analytics have apps that move beyond you recording your mood directly to actually inferring your mood by analyzing your voice patterns during phone conversations. This in turn allows a calculation of your stress levels and can give you feedback and advice about stress management.
Another variation is to use the phone using the GPS tracking facility to record activity levels as a marker of a patients’ “social pulse”. For example, if an older person changes their activity patterns based on monitoring of the phone movements then this might be a sign of decline in functional status. Deborah Speaking at @TEDMED Deborah Estrin has referred to this as our “small data” and is encouraging processes to obtain this data from telecommunications providers.
All of this data can be used for personal use but uploaded to the cloud and given the right permission your medical practitioner could access the data remotely and in return provide analysis, interpretation and clinical advice on the basis of your data. Automated alerts flowing to healthcare provider or patients could be a form of minimally present telemetry.
Looking at these existing and emerging technologies one can see that having a data-driven life doesn’t need to be a full-time job even if you are collecting data 24/7/365. Even the activities which might require an effort at data entry, like recording diet or medication use, might become more automated through image recognition software or barcode/QR-code scanning. This could be continuous and uninterrupted for individuals using google glass. I think we can call this the minimally disrupted quantified self.