the policy cognologist

From across the Atlantic comes news of apparent financial maladministration at E-Health Ontario, the body charged with implementing the province’s e-health strategy.  It seems to be the usual nonsense of untendered contracts, friends in high places, and chums helping chums.  It is also an example where no one seems to have asked the simple question, “why would you do that?”  — the strategy is a nonsense, and I am surprised that no-one challenged this before the policy had gone this far in implementation.

I would, naturally be more inclined to be concerned if the province’s e-health strategy were actually about e-health, or likely to deliver results worth having, but the $700 million or so per year will be spent on things like a diabetes registry, wait times, electronic prescribing/electronic health records.  Only the last have anything really to do with e-health.  The last can also be procured, so there really isn’t a need to make a supplier meal out of putting something in place.  I will concede though that an EHR is a critical component of e-health, but it isn’t quite the same as e-health — it is a bit like confusing the foundation of a house with the home it will become.  But having worked on eRx,  the province’s failure to prioritise some sort of a patient-held smart card is a mistake as without this it is difficult to deal effectively with identity.

Without system redesign in the province, the e-health strategy is really just throwing good money away and given the current economic (and political) climate, this is no longer an option, if it ever really was.

Two things are of critical importance.  First the province needs to have a thorough-going governance review of e-health Ontario, mainly to determine how to make sure it is fit for purpose in actually providing the leadership for development of an e-health infrastructure service delivery platform.  Secondly, and this is the challenge, it is necessary to make sure that the e-health services are ones that the public will use and value.  The province has failed on both counts.  The next challenge though will be to find people to review e-health Ontario who haven’t been tainted by this scandal and benefited from the feeding frenzy e-health Ontario created. It may require looking further afield, to interested, but uncontaminated parties.  They may even not live in Ontario — golly gosh, so much for made-in-Ontario mediocrity.

So, having vented on that last point,what would an outline e-health strategy look like for Ontario, assuming that some governance arrangements are put in place,.  These are really just illustrations as certainly I would want to get a good understanding of priorities from interested patient groups:

• There are about 92 rural and small hospitals in the province.  A good plank in an e-health strategy would be to enable them to become a single, integrated, but distributed healthcare provider, perhaps with some sort of local and shared corporate governance.  A distributed healthcare provider, using e-health infrastructure technology would deliver specific outcomes to rural people, such as access to networked diagnostic imaging technologies, electronic prescribing and remote access to health records.  I would certainly save people in Thunder Bay a lot of trouble getting down to Toronto for a scan.  With a little bit of imagination and thought, this could work.
• About 60% of diagnostic facilities are located in Toronto, but which has only about 25% of the population; these are licensed clinics which often only offer a single procedure.  Using networked imaging technologies, remote diagnostic telecare booths (you can buy one from Cisco) many of these suboptimal centres could be relocated either to the rural network, in the previous plank, or provide a more accessible urban service across the provinces main urban centres.
• Smart card technologies (whether a smart card or an electronic secure passport) would give a better reason for constructing electronic health records than ones focused on improving data access for health professionals alone.  Patients, when given access to their health information, will have a vested interest in ensuring that the information is correct (my Ontario health record when I lived there had an error showing I had a condition affecting women, but I am a man — I still don’t know if the error was corrected; in an electronic system, that error would have been a problem, but I would have made certain that it was corrected, too).  As an ‘auditor of one’ patients can make sure information is correct, and drive substantial service quality improvements.  This is not to say that health professionals can’t do that, just that the evidence shows it comes slowly and is complicated by cartel-like professional practice barriers.  Start by putting the e-health card in the hands of the heavier users of the health system, to better manage their healthcare, access to information, and gradually as people see their family doctor, or get born, migrate the whole population over.  Of course, this will mean that family doctors, clinics, pharmacies will have to adopt some sort of information system.
• Don’t do what the English NHS is doing with Connecting for Health, by creating a large-scale government-led initiative.  E-health Ontario’s predecessor took a look at Denmark, but failed to learn the lessons despite what they wrote in their sham of a consultation document — they missed the point partly because they appeared to have another agenda heading toward a particular solution.  Denmark has shown how disparate stakeholder groups can work together to create an information system that works, and does things people value.   Better that than spend vast amounts of money on a grand plan to nowhere.

The general plan is to build an infrastructure that starts with the patient/family as user.  My experience in developing an interactive health television channel showed me the importance of starting there, and defining the benefits from that perspective.  Change will drive from that end too.  Finally, engage all the stakeholders (like the Danes did), find commercial partners with interesting technologies that do things that people value (rather than whizzy technologies), look for alternative systems to pay for healthcare services, as failure to develop a suitable and workable reimbursement system for e-health services is a barrier ( just ask Norway).  Oh yes, don’t forget political will.

Progress in healthcare can come from changes to the way clinical work is done.  An example is interventional radiology, which combines radiological investigation with treatment, in a single step.  It moves radiological technologies, such as MRI, CT, Ultrasound, from being mere diagnostic technologies to integration into the surgical work itself.

So why the slow uptake in the UK where a couple of years ago the Healthcare Commission, in one of its investigations, noted that this approach to treatment would have probably saved lives?

The NHS is a slow and late adopter of technologies.  Difficulties giving the necessary clinical freedom to health professionals means that important leading edge, but proven technologies, are slow to be adopted.  The exploration of novel approaches to offering clinical services, outside of hospitals, for instance, in free-standing “theranostic” (therapy and diagnostic) clinics would not only advance the cause of patients, but achieve a step change in service delivery by NHS providers.  Why aren’t the newly freed Foundation Trusts getting on the business of developing services wrapped around this approach to care?

People are obviously of good intent by urging reviews of funding to elected officials in the suitably hushed setting of the House of Commons, but in the gritty reality of healthcare delivery, creative solutions are needed to address not only the timely implementation of interventional radiology, but alsoovercome the fear of change, of novel technologies and of changes to  clinical practice that change and technology brings.

The UK is again in the midst of a crisis of purpose as it seeks to understand how to balance the monopoly (under) supply of health care that characterises the NHS, and enabling individuals to purchase (mainly) medicines that are deemed too expensive.  Apart from the argument made in an earlier posting that the NHS cannot get off the hook of paying for high cost healthcare, rationalising the current mix of copayments can only be good.  The effect of enabling top-ups (as if that is really what they are, of course), or more accurately copayments, would actually harness a variety of features that currently elude UK health policy makers.

Enabling wider use of copayments (also apart from the literature which would say they increase social injustice and are an example of a policy zombie), would turn the UK NHS into the French health system — and given the evidence from France, that might not actually be a bad thing.

Such a change would have the effect of clarifying the current dispensing fees for medicines, bundling them with the cost of medicines deemed by NICE to be excessively costly, and enabling payment by individuals through suitably prepared supplementary health insurance — which reversing the senseless actions of the Labour government in 1997 could be made tax deductible.  It would also enable a simplification of the current gap between NHS and private dentistry (by blending entitlements) and enable easier utilisation of the wider healthcare infrastructure of public and private (sorry, not very politically correct here, independent) provision.  Further bundling with individual social care budgets would open the way toward consumer-led purchasing of healthcare, something of considerable interest to people with long-term conditions who no doubt dislike others telling them how to lead their lives.

All this would provide the needed disruptive influence to drive provider reform and improve quality and system responsiveness much faster than would otherwise be the case if the PCTs, ICOs and whatever next crops up, were to try to achieve the same goals through institutional planning processes (not an easy thing to do with complex adaptive systems that in effect ignore the impact of patients in the system).

No need to create a market, no need to fuss about social justice, individuals would be given responsibility for their care and that is a just thing to do. The NHS in its current form  effectively insulates individuals from the consequences of their own poor health and lifestyle choices which only exacerbates injustice to the extent that it undermines individual autonomy.

Rather than copayments having the economic effect that various folk have written about, policy makers would have instead a mechanism by which public health goals could be pursued, through a partnership between the state/NHS and the individual, rather than a partnership between the state/NHS and PCTs/itself, with the patient as an interested, but disenfranchised bystander.

Central to all healthcare systems is the notion of the hospital.  Are these remnants of industrial-age or can they be rethought and refreshed for the post-industrial and information world we are likely to inhabit for some time?  Foucault spoke of the birth of the clinic (hospital); I will write about its demise.

The logic of hospitals has a lot to do with aggregation of technologies and brains.  It is easier to move the patient to the hospital where integrated systems kick in and provide care, than to have all that expertise go to the patient.  That paradigm is getting tired, but yet our thinking is still hospital-oriented.  What is the way out?

Evolution of artificial intelligence systems, for instance, points to the possibility of remote locations having access to clinical brains, either embedded in portable diagnostic technologies, or through distributed intelligent systems, or even more mundanely at the end of a telephone.  Perhaps it will take time to be comfortable with robotic surgeons, but remote manipulation of robotic surgical equipment is not inconceivable in daily use.

A rather interesting book from the early 1970s, by Maxmen, The Post-Physician Era, offered thinking about the direction of travel.  While getting many things wrong — we still don’t have shopping malls on the moon, he did, given the thinking of the day, accurately identify AI as a challenge to human diagnosis, and saw the obsolescence of the pharmacist through robotic dispensing.

The overall forces at work here are the migration of specialist human knowledge into devices and into software, that can be used by less-skilled people (i.e. not necessarily clinical professionals).  Self-diagnostic testing kits are just a primitive example.  Roll the clock forward with electronic health records, Web  2+.whatever, and advances in materials science, etc, and we have a constellation of factors which form a new pattern for healthcare service delivery.

And when will we build the last hospital?

It takes perhaps 3-5 years to plan a hospital and a couple to build one.  It is also critical in the design to take into consideration the evolution of use, changing demography, etc, to perhaps 20 years into the future.   I think by 2025 we will acknowledge that the existing hospital infrastructure should not be replaced, but slowly wound down as useful clinical environments.  Given the average useful lifespan of anything from 25 to 100 years, we need to be thinking the thoughts about the last hospital within the next 5 to 7 years.  There are, no doubt, hospitals in the early planning stages, that when built will be instantly obsolete.

Tempus fugit.

How can I be sure the medicine I take is genuine?  In some countries, there is an almost even chance that it is counterfeit; not just a cheap substitute, but a real fake,  ineffective,  probably harmful, and maybe fatal.  Some counterfeit medicines were found in Hamilton, Ontario, earlier this year and the pharmacist has now been charged by the RCMP.

Counterfeit medicines are a global problem, with trade estimated to exceed US $36 billion a year.  The World Health Organization estimates 8-10% of all drugs supplied globally are counterfeit.  The European Union estimates counterfeit drugs cost their health systems €1.5 billion annually. 

Counterfeits are a clear and present danger to human health.  Africa is threatened by counterfeit AIDS drugs, while in Haiti, Nigeria, and Bangladesh almost 500 mainly children were killed from fake paracetamol syrup.  Perhaps 192,000 people were killed in 2001 in China from counterfeit medicines.  Counterfeits circulate in the European Union, with two recent cases in the UK alone.  And Canada. 

Fake medicines are hazardous, with documented toxicity, instability and ineffectiveness but few people are experts in pill authentication (even pharmacists get fooled).  Counterfeit drugs are easier to make — in portable cement mixers – and fake than money.  But there is little patients can do but rely on assurances by others that drugs are genuine.  That may not be good enough.

Our health and medicines regulators believe there isn’t a problem because there are few cases.  But recent research in Europe counters this regulatory denial with evidence that regulators have little hard evidence on the scale of counterfeiting.  Problems with medicines are rarely associated with the drug being fake.

Counterfeit medicines don’t just show up in the local pharmacy, they are infiltrated into the supply and distribution of legitimate medicines by rogue, criminal organizations and individuals, who specifically target the weaknesses in this system.  But counterfeiting is seen as a patent issue not the criminal act it is.

Once a medicine has been factory sealed by the pharmaceutical manufacturer, there is no assurance that it will reach the patient unopened; a pharmacist and doctor can open it.  However, there are companies with the licensed authority to repackage factory-sealed medicines with new labels in new languages.  Unscrupulous distributors can conceal the illegal substitution of counterfeits within our apparently highly regulated system.  Canada, a net importer of medicines, is vulnerable from this as it imports medicines from countries that are known sources of counterfeit medicines.

While US/Canada medicines trade has focused on internet pharmacies, the real problem the internet is also a counterfeit drug delivery system and a real problem by the US, which views Canada’s system as easily compromised by counterfeiters.

Therefore, we need to ensure that any tampering with a product’s factory packaging is clearly evident to others.  Using ‘drug provenance’ would show who has handled, opened or repackaged a product; another way is to use advanced ‘track-and-trace’ technologies such as radio-frequency tags (RFIDs) to track shipments of medicines and determine if they have been tampered with.  However, there are stricter controls in place to deal with the movement of cattle than medicines.

Nevertheless, things are slowly improving, with the US FDA promoting the use of RFIDs by 2007, and efforts to improve data collection on counterfeiting.  But there is little public awareness of this global threat, as regulators focus on the operation of pharmacies rather than the origin and safety of the medicines themselves.  Legal sanctions are often weak, or inappropriate, considering the grave health risk counterfeit medicines represent.

The way forward will require ‘counterfeit proofing’ the supply and distribution of medicines.  The criminal law needs rethinking to link human health and counterfeit medicines.  Good data is needed to inform our actions and understanding to ensure appropriate regulation.  Finally, the problem must be viewed as a global one and Canada could show international leadership in proposing solutions in an area were there is common cause amongst regulators, health professionals, pharmaceutical companies, and healthcare organizations.

The health system works on the basis of trust, and patients must trust that the pills in that little bottle are what they are supposed to be.  But while the vast majority of drugs are perfectly legitimate, a more comprehensive solution to the problem of counterfeits is needed.

The ‘perfect storm’ as the CMA so wisely observed, gathers strength, most recently with the endorsement of private health insurance. Health system leadership and politicians have let the system fail on their watch; we face disrepair, and the risk of catastrophic failure.  Canada’s relatively unique position, with a front window view of the US health system, has dulled our creative thinking and we have fallen into a false complacency, deaf to the cacophony of reform happening in other parts of the world.  Perhaps, they were paralyzed by the fear of creating a US-style health system.  But times change.

 There are two lessons from the Supreme Court’s ruling on Chaoulli v Quebec.  The first is the failure of expert testimony to the Court to provide any evidence from any other health system in the world (!) that private health insurance should be avoided at all costs.  World renowned expertise failed to provide the evidence that health systems with private health insurance were to be avoided: just tell that to the Dutch, the French, the Germans, just about anyone else for that matter.  But perhaps not the Norwegians, who have a 100% publicly funded health system, and the longest waiting lists in Europe, so long in fact that they have a so-called ‘patient bridge’ programme to fly patients to Germany for treatment.

The second is that government policy can be tested against the Charter.  To paraphrase Richard Titmus, the sociologist and political theorist, a health system is a poor one when it fails to meet the needs of all.  The collectivist rhetoric that has characterized much health debate in Canada, and is a broad theme running through the Romanov work for example, conceals an important shift in contemporary values which has not been fully grasped in Canada.  Perhaps until now, that is.

Other countries have had to come to grips with changing public thinking and are making the movement, albeit slowly, and not always happily, to a new interpretation of the social contract: namely, that governments have no pre-emptive right to deprive individuals of their constitutional rights just to achieve collective social objectives, such as Medicare, and, perhaps more subtly, governments have no right to create monopoly suppliers of public services that manifestly fail to meet the needs of the public.  So services that are underfunded, underbuilt, but publicly funded or delivered are no longer defensible simply because they are public!  Therefore, governments have a new problem, concealed within this Supreme Court decision, that of learning how to provide services that the public will value and use.  It is no longer sufficient to argue that the proper role of the state is to provide public services, if they cannot do it well.

I’d like to think that this new world would be liberating for governments, but perhaps they like to meddle and tinker rather than provide strong leadership and direction, and importantly social purpose to public service institutions, like health care for example.  As was said it seems so long ago, by Osborne and Gaebler in their book Reinventing Government, governments should steer and not row. Put more elegantly by Mario Cuomo, former governor of New York: “it is not government’s obligation to provide services, but to see that they’re provided”.

The debate over private health insurance must not conceal the real problem, that the public purse is financing at federal and provincial levels, health systems in the various provinces that are manifestly failing to deliver value for money, or indeed a service Canadians will value and use. 

Where can we look for some ideas?  Often a source of inspiration in welfare state reform, the United Kingdom has embarked on changes that will virtually reinvent the public service ethos there.  Under the banner of ‘consumer choice’, they are reinventing their National Health Service by giving consumers choices in how, when and from whom they receive public services, largely putting to rest the many tired arguments about whether patients cannot exercise informed choice in health care.  One consequence of this is greater private and voluntary sector involvement in service provision. In health care, the shift is virtually seismic, with the dismantling of the NHS as a ‘provider driven service’, characterized by services dictated by what the hospitals and other care providers can or want to do when and how they want to do.  The new ‘patient-led” NHS is focused on buying (what the British call ‘commissioning’) those services, responsible for doing what Cuomo says: ensuring that the health services that are provided are timely, convenient, and to high standards.  We in Canada have a lot to learn from this, as we try to avoid consumer demand, or protect acute care hospitals from the primary care revolution.

Governments can only tax with the will of the people, and when taxes produce substandard levels of service, inconvenience and delay, the public is right to call the government of the day to account.  Increases in taxes cannot be justified unless there is demonstrable improvement in service, and increased value for money. The UK is exploring this new territory, and rethinking in particular how its health service will work.  Funnily enough, much of the impetus for this also came from rulings of the European Court of Justice.  What they have learned, though, is that the government has no moral right to be a monopoly supplier of public services.  Choice is the hallmark of public sector reform there, and offers Canada lessons for its own restructuring.

Will an emphasis on private health insurance be the solution?  To adopt the position that private health insurance is the solution to a failing public system is to abandon the principles that are the logic of an effective system of health care. But countries which have wide-spread use of private insurance, such as Netherlands, Germany or France, also have integrated principles of private insurance into their national health system.  Interestingly enough, these countries also show the value in putting money into the hands of patients and consumers to reinforce the value of their health care decision-making  The private insurance market in the UK is an opt-out from the national system, not a complement to it, and as the reform of the NHS has quickened, the private health market has shrunk.  Other countries have had more success with mixed insurance models and do not appear to have fallen apart or suffered from widespread social inequality, indeed, the WHO rankings would suggest the opposite, with Canada ranked well down after France, Spain, and Italy.

The best direction for new thinking, therefore, is to look for reforming ideas which endorse greater consumer choice, greater consumer purchasing power whether through private insurance or through commissioning reform.  But purchasing choices require greater flexibility in how health services are delivered and this debate is, as Senator Rigby as observed, full of mythology.  In the end we need a fully integrated public/private health system.