So I’ve just read this article in KevinMD about oncology and palliative care: The Tension Between Oncology and Palliative Care
Whilst I agree with the overall sentiment I think we can generally do better. First of all – this isn’t an issue unique to oncology – it is important for all sub-specialties and all patients/consumers where end-of-life is an issue.
Secondly this is a societal issue. Bottom-line is that nobody lives forever and so thinking about these things is important for both individuals and society. Society needs to get beyond the notion that technology trumps death.
Thirdly we need to move beyond palliative care as end-of-life care to the notion that supportive and symptomatic care is useful throughout the whole illness. This will both improve outcomes overall and prevent harm.
In an ideal world there is no oncology versus palliative care, there is just care.
So apparently Tony Abbott is blocking the referendum on local government http://www.smh.com.au/opinion/political-news/coalition-delivers-blow-to-local-government-referendums-yes-campaign-20130702-2p8we.html
I’m not sure that I have a problem with this.
Australian Government is built on the notion of subsidiarity. The Oxford English Dictionary defines subsidiarity as the idea that a central authority should have a subsidiary function, performing only those tasks which cannot be performed effectively at a more immediate or local level (ripped totally from Wikipedia).
The Rudd healthcare reforms are underpinned by the principle of subsidiarity and yet the reality is the local health districts (LHDs) control some of the decision making yet in reality the State and Federal governments control the dollars and well…you can’t do healthcare without those dollars…so despite decentralised decision making the control is still centralised.
So if Tony is blocking the referendum…think of it in this context….subsidiarity can cause as many problems as the perceived benefits…..for the KRudds of the world it might just be for appearances not substance.
So I work in health and well to be frank health is not exactly thriving.
I am associated with 3 public hospitals with a collective EOFY debt of around 50 million dollars. The way the powers want to catch up is with cuts. But the problem with cuts is that it doesn’t actually deal with the fact that service needs to be delivered.
People being to hospital costs money so the logical way to deuce expense is to stop people being admitting to hospital is to reduce admissions. The only real way to achieve this is to stop people being admitted to hospital. The only way to achieve this is to provide outpatient services that otherwise meet the inpatient demand.
The problem is that ‘new’ outpatient services is a new expense and the system can’t countenance that.
Well I think I fact of life is that sometimes you have to spend a dollar to save a dollar.
The real issue is that health services want business cases: well tell me how much you are willing to spend to save a dollar. I’ve heard one dollar for 3 saved but this is a clowd-cuckoo-land number. I agree 1 for 1 isn’t a gain but 1 for 2 is a tangible benefit
Regardless of the breakpoint let’s get a number to inform our business cases.
In the two weeks before Edward Snowden broke news about PRISM I gave two lectures about research ethics. It is traditional to note that what is ethically acceptable is in constant flux as technology changes and also that ethical principles tend to emerge in times of crisis, e.g. human experimentation that is also genocide. An observation that I made during these lectures was that the next crisis is probably going to relate to the use of ‘big data’ repositories in health. Well I didn’t quite nail the health part but bingo! – the use, security and privacy of individual’s data, in this case meta-data from telecommunications, email and text messaging, became the topic of the day.
The public is now aware that there are large repositories of data about themselves. There will start to be greater awareness that some of these data repositories include health records that are collated electronically. Currently, in Australia, these repositories and most other healthcare systems, these repositories are not very detailed but they do record if you’ve been to hospital, why you’ve been to hospital and a host of demographic information. This data is collected legally and is used legally for public health and planning purposes and in many cases for medical research, usually under additional regulation through ethics review processes.
The other bit of information that the public will become aware of is that these repositories of data are linkable. This means that a dataset collected in one system like healthcare is potentially linkable to a dataset in another sector like finance, or the justice system.
The issue becomes how the public, how society reacts to this knowledge and what it believes is reasonable use. The argument in the op-ed pieces in the major publications is that programs like PRISM serve a purpose in protecting the public from security threats. Indeed, surveys of the public in the US suggest that generally speaking people support this assertion. So there are some ‘reasonable uses’ in the public interest. No doubt, the same will apply to health data. The question is where the thresholds lie and how much transparency there will be.
But let’s get back to all of that metadata. Clearly there might be uses for tracking terrorists or gun-owners. But there might be healthcare applications. The concept of small data has recently emerged. The example is the notion that your phone company can track your movements through your mobile phone. If an older person was less active this could show up in their small data and indicate that they are sick. Who does this data belong to? The person or the phone company?
At the moment there are no answers but no doubt there will be trickle down implications from the Snowden affair to other applications like healthcare.
So I attended another administrative meeting today. One of the jobs was to review (& approve) a policy that came from ‘above’. There was a lot of pressure from ‘above’ to implement this policy despite the intention of the Federal Government to support subsidiarity (put simply – local decision making). The fact is that the policy is poor and not-evidence based. Many parties outside our local health district oppose the policy. And in fact our local opponents to the policy could site evidence that it is poor policy. Our ‘local’ decision was to compromise and endorse the policy and produce an in-house business rule to overcome the short-comings of the policy – or, in other words, we’ll endorse it and ignore it. I’ve seen this happen several time before in other guises, for example, yes we endorse the policy but we have no money to implement so we will endorse and do nothing. In the National Standards good governance is the number 1 standard: unfortunately this will be about process rather than outcome. Surely it would be better to reject and develop good policy rather than adapt to bad policy.
imedicalapps has reported that Apple may be starting to impose tighter restrictions on the approval of mHealth apps through the iTunes store. This follows on the appropriate oversight of the uCheck urine analyzer application (a way for automated reading of urine dipsticks).
The implication of the report is that Apple will only accept medicines information that is endorsed by the manufacturer of the medicine. Whilst this is a liability issue for Apple in some respects it is also fair guidance although one would argue that endorsement of the manufacturer might simply constitute dissemination of medicines information in accordance with the approved Product Information (PI) rather than written endorsement by the manufacturer.
Whilst such an approach is in keeping with law in actual medical practice a large number of medications are used according to valid evidence but outside information in the PI, also known as ‘the label’.
There is an urgency for a public debate about the best way to deal with this issue. Given the number of apps already in existence and the number of medications it is not likely that a regulator or an individual company has the resources to review everything in a timely fashion. The best approach might be to pursue (international) standards as proposed by organisations such as Happtique rather than a draconian regulatory approach.
Just as the NSA scandal has revealed the level of involvement of IT companies in our day to day lives we must also remember that these companies….Apple, Samsung, Google, etc, are now also the largest healthcare providers and the main conduits for health information both for practitioners and patients.
One of the positions required in the 21st Century is SOCIAL MEDIA MANAGER.
Hospitals may have Communications Managers or Public Relations Managers or occasionally press officers for really large institutions. In my experience these positions are largely about reducing, not increasing, communication with the public and with the hospital’s relevant communities – unless of course there is a good news story.
In the age of social media the hospitals will need social media managers because if they don’t have them their communities will be incorporating them (hospitals) into social media commentary without their input.
Hospitals will worry about negative comments but in general that is fine….in fact some might consider it to be called ‘accountability’. Interestingly social media may help identify hospitals providing quality care: Bardach NS, Asteria-peñaloza R, Boscardin WJ, Adams dudley R. The relationship between commercial website ratings and traditional hospital performance measures in the USA. BMJ Qual Saf. 2012. In this study high Yelp scores correlated with lower readmission rates and mortality.
Social media provides an avenue for the public to provide feedback on hospital performance that may help hospitals undertake quality improvement: so social media is part of a consumer engagement strategy. In addition social media is a channel to keep the community informed about important health information, e.g. a flu-outbreak. Social media could be used to keep the community appraised of opportunities to participate in research. And of course there are fund-raising opportunities.
For the moment the hospital I work in won’t allow staff to access social media at work so I’m not expecting a social media manager any time soon. Sooner or later we’ll have to join the rest of the world.
In the last month I’ve been to @TEDMED and seen Laura Deming talk about prolonging life. I’ve also been to #TEDxSydney and seen David Sinclair discuss his research in anti-aging drug development. Each week there seem to be new publications in the scientific journals and reaching the mainstream media. There has been success in animals and human trials are in progress.
I don’t need to tell you how obsessed the world is with aging and slowing it down. Even if we get past the issue of vanity the key metric of economic prosperity is probably not per capita GDP but the life expectancy of its’ citizens.
Let me propose that an actual treatment, and I assume it ill be a drug, that slows aging, will be a game changer for how the pharmaceutical industry functions.
If we look at the history of prolonging life expectancy we can really identify a few key transition points that include:
– basic sanitation and food and water security are probably the single most important things for prolonging life. Keeping clean and having regular access to safe food and drink is the starting point. Value adds include refrigeration, electricity (to support heating and cooling) and running potable water). The main impact of these ‘innovations’ is to reduce infectious disease.
– second order innovations include vaccination and antibiotics to fight infectious disease
– the third tier of innovations is prevention and treatment of diseases related to abundance i.e. heart disease, tobacco related illness and although it hasn’t been properly tackled yet, morbidity related to obesity.
I like to say to my patients that they didn’t die from infectious disease in childhood and their heart specialist kept them alive after their heart attack so they can live long enough to get cancer or dementia (or death from complications of frailty). Successful anti-aging drugs will need to not only prolong life but reduce the chances, or at least, not increase the chances of cancer or dementia, and do so in the context that the chronologically aging but not physically aging person is staying fully functional. This is a very important distinction: often doctors will refer to a ‘good 85 year-old’ versus the ‘poor 75 year-old’ as a reference to physiological age not chronological age.
So lets assume this ideal anti-aging drug can be developed and lets assume it is actually very successful i.e. it prolongs functional life in good health by a meaningful period of time….let’s say a decade. What does it mean for the pharmaceutical industry?
Well I think we need to look back at the other game changers in longevity promotion listed above. Access to food, water and sanitation is considered a basic human right. The second and third levels of innovation probably haven’t quite become universal human rights but only in the sense that they are contingent on the first innovation and the reality is that those without access to the 2nd and 3rd set of innovations often haven’t had their universal human rights fulfilled.
So I would make the case that should an anti-aging drug become available, and if it demonstrates tangible flow on health (an other benefits) then access to the drug will become a right rather than a privilege based on economic advantage. In this case there might not be the usual monopoly advantage that pharmaceutical giants usually exert as populations won’t accept it. And remember, it is more than likely the drugs will need to be taken forever, from what ever age is deemed acceptable.
Now it could play out that the usual pathway of drug access occurs and that actually by the time we are really understanding the pros- and cons- of these agents the patents are expiring but I don’t think this is really going to happen. These drugs, if they really meet the aims of prolonging life without complications, will be marketed like Viagra-on-steroids.
Clean water is a universal human right. Who would have thought that internet access would become a universal right but it is rapidly becoming so. A successful anti-aging medication would probably also become a universal right.
Addendum: people will argue we shouldn’t use such drugs because it isn’t how things are meant to be (i.e. we have a natural lifespan). We maybe so but this quite simply isn’t what humans do….we meddle with nature to try and make it (and ourselves) better…..there may be a philosophical argument but it will be trumped by reality.
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.
In Australia in 2010-11 Healthcare and Social Assistance accounted for 11.4% of employment, bypassing the retail, construction and manufacturing sectors. Around the world healthcare is a growth area for employment and it consumes progressively larger portions of GDP. The traditional hospital consisted of two types of staff – clinical staff or doctors and nurses, and support staff or administrators and cleaners, etc, etc. But staffing needs change over time. For example 30 years ago who would have said hospitals and healthcare systems would need departments of information technology and Chief Information Officers?
This post flags the start of a new series of blogs on new job (descriptions) for the hospitals and healthcare systems of the 21st century. Some of the jobs I’ll post about will include implementation scientists, behavioural economists, social media managers, big & small data analysts, molecular pathologists and diagnosticians, medical history curators, dignity therapists, disease forecasters, system navigators, and prevention strategists, to name a few.
If you think there is a new job that hospitals need then let me know through twitter @wsliauw