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Federal EHR and ObamaCare

I was delighted to have had the opportunity to comment on the launch of the e-health records incentive programme in the United States. I was interviewed by NextGov, an information service provider in Washington.

You can read their article and my comments here.

Health literacy is moving up the political agenda at the European level, and the hope as always is that the direction of travel is truly

empowering for citizens.  Having been involved in launching the world’s first digital interactive health channel for public access, in the UK in 2000, one thing I learned is not to assume that everyone is alike, that people make choices and that services need to respond to these choices. I also advised the Council of Europe on work on patient access to information over the Internet.

Much energy will no doubt go into health literacy, but there is little understanding of patient empowerment apart from the use of the words themselves. Health literacy, too, sounds like we ought to know what it means but when dealing with organised provider interests and risk aversion by public funding bodies, caution is required.  Much energy has already gone into e-health, with little services for the public to show for years of research and pilots. So we have a weak starting point.

Healthcare systems are poor doing what retailers take for granted, namely the segmentation of their users so they can create a range of service offerings that meet a broad range of people. Compare your hospital to Carrefour. When we launched the digital interactive TV channel, we worked with a simple framework drawing on work by the California HealthCare Foundation, “Health E-People” report. This helped us understand that there were different types of users with different needs, and that in developing content and services we needed to be mindful of this; we also conducted the first and most comprehensive ‘audience user study’ of the British health consumer ever undertaken, using media models to understand how people sought information, what they wanted to use it for and what the barriers were to its use for them. Recent work by the Pew Internet Project has identified the “9 Tribes of the Internet”, which has usefully taken our understanding into population segments based around how people use mobile and Internet-based technologies.

Many of the assumptions of literacy will focus on how people use health information in various forms.  But the wider use of technology, including wireless devices, is seen as a critical element of the future of healthcare.  So I have combined these two taxonomies to identify what I think are the key health literacy challenges for the 21st century for e-health.  I have only sketched out some relationships in the table below (it is not complete as this is a blog entry not a full blown report) but it gives an overview of the sort of considerations that are important.

There are also lessons for policy makers and people concerned with health literacy:

1. Eventually, the individual will have to own their own health record, and decide what to do with the information in it, with whom it get shared, and those who use that information will be accountable to the patient for the use of that information. Health literacy also requires control otherwise there is no reason for me to be engaged — others will help me if I get into trouble. The table below shows that some people will have trouble with this when technologies are a key element.

2. Not everyone will be digitally enabled. This is NOT a digital divide and is NOT evidence of social exclusion, but is a personal choice of people to lead their lives as they wish in a pluralistic society; this is hard for some policy makers to understand and the term ‘social exclusion’ is frequently used without an appreciation of personal choices. The key implication is that services will need to move very slowly to adopt technologies with some types of people. In time, perhaps people may adopt low level access and interactivity, but for many people technological interactivity will remain at best an option not a preference. Perhaps in some future world things may be different, but even today many people do not adopt common technologies, and with rising concerns about energy use and changes to personal lifestyles, we cannot assume the emergence of a uniform technologically based society in the next 5 years.

3.The benefits of technologies in the traditional health technology assessment model will need to pay much greater attention to the segment of the population likely to be involved as their distinct patterns of use and preferences suggest that a one-size-fits-all approach would never work. This means that designing and implementing e-health services, and other health technologies will need to be far more flexible when it comes to the structure of service delivery. This is hard for health systems to understand as they work on the basis of uniform service delivery, paying little attention to unique local or individual requirements. It is a provider dominated environment, not a consumer-centric one.

4. The tribes model suggests that even within health service organisations not everyone will necessarily buy into the technology revolution. Many people work in healthcare precisely because they want to have personal contact with people, and not through intermediating technologies. Since many patients also would have that preference, organisations may need to structure services and staffing to ensure the right mix of people service the public.

5. The great challenge of patient compliance, concordance, adherence (whatever the current term in vogue) may become more dependent on the features of the technologies, their design and ease of use, than on the willingness of the patient to follow a particular care regime. Helping people understand their limitations in using and working with technologies as matter of personal preferences will become very important, which increases the focus on personalisation of healthcare. Similarly, device designers and makers report they see their customer as the doctor (yes, just the doctor) as they specify what technology the patient uses; they do not see patients as customers, and therefore, may need to be encouraged to design technologies that patients and informal carers may use. There is a design revolution waiting here! (where are you Philippe Stark?)

The current approach to health systems in general, especially where the state is the main source of funding, leads to omnibus systems of service delivery, which largely ignore individual preferences — it is a system truly structured to favour provider interests. It would be a mistake to assume a similar approach with e-health and similarly with health literacy. Instead, we should be encouraging approaches which are sensitive to the preferences and usage patterns of individuals and which accommodate to their different literacy styles. In this way, too, we may actually see ehealth services being offered that people will value and use. And that will be a reason for people to become more health literate.

See the table I prepared linking the Pew 9 Tribes with my analysis of its applicability to e-health/healthcare. (PDF here [Ehealth and the 9 Tribes] as tables don’t format on the post very well, sorry)

Want to know more?

There is more heat than light in the e-health technology area, but I have found some material useful. E-health services don’t really exist as a general feature of healthcare systems, as most are still anchored around the telephone, or simple appointment booking and some electronic prescribing.

To get you started, it helps to think not so much about technologies but what they can do and why that is important. These two European reports may be a way in, though the reports may overcomplicate. There is a tendency for e-health to be seen from a service provider’s perspective and less so from the end-user/patient perspective.

Braun A, Barlow J, Borch K et al. (2003). Healthcare Technologies Roadmapping: the Effective Delivery of Healthcare in the Context of an Ageing Society; this document has a useful taxonomy of health technologies.

Cabrera M, Burgelman J-C, Boden M, da Costa O, Rodriguez C (2004) e-health in 2010: realising a knowledge-based approach to healthcare in the EU; this document outlines some of the skills needed for different groups of people who might use e-health technologies.

NOTE: Use a search engine to fine more or email me for a short bibliography.

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Sample patient record view from VistA Imaging
Example of EHR (VISTA)

There is trouble in e-health land, at least in Ontario’s funny notion of what they might mean.  EHealth Ontario has been subject to an emergency audit of its procurement or not of an electronic health record [EHR] by the Auditor General of the province.  Apparently, somewhere approaching C$1 billion has been spent with virtually nothing to show for it.  The problems lie in a bad ehealth strategy, and inappropriate use of consultants.

There are lessons here for other jurisdictions, as they seek to embrace the benefits of EHRs, and ehealth more widely, in particular. Of course, what is an EHR for, is the core question.

One of my alma maters, McMaster University, has sprung into the fray saying it has an EHR called OSCAR that could be implemented for perhaps 2% of the estimated cost of a provincial EHR.  Their argument being that a lot of doctors are using it.

EHRs are not a tool for doctors, though.

EHRs are an integrated information repository to facilitate better healthcare.  Doctors are not the only oranges, and nurses, physios, social workers, pharmacists, OTs, oh, yes patients and parents, informal carers, too, need access to health records. In my view, patients should own and hold their own health record, to ensure high audit standards (would you let an error remain on your health record if you knew about it?).

Servicing the specific needs of doctors alone is not an EHR strategy worth having, and doctors themselves should be the first to say this. It is time they showed leadership within the wider healthcare system, and rejected self-serving models, such as McMaster’s, which automate obsolete information models. McMaster, too, should have known better.

The Ontario Ministry of Health has wisely rejected OSCAR’s offer, but for the wrong reasons.  Citing the need for doctors to choose their own systems, just shows their continuing logic of catering to the needs of a particular health profession, rather than addressing the systematic provision of patient information within an integrated decision-support system.

All this is being driven by beleagured officials who really need to think again about their priorities and why they really need an EHR.  Perhaps they are afraid to admit to having made a mistake.  Such hubris.

Clearly more work is needed to define the purpose of the EHR and the goals for an ehealth strategy in Ontario (and other jurisdictions of course), before more taxpayers’ money is spent on ehealth.

Oh yes, apparently Ontario are going for a tender on a diabetes registry. NYC has one. I fear the worst.

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The elephant in the room in healthcare is the hospital, about which I have suggested that we will build the last one in 2025.  What will “smart hospitals” look like, and why should we care?

Hospital Universitario Marqués de Valdecilla, ...
Hospital Complex, Spain

Why should we care?

Hospitals are expensive and complex labour intensive organisations originating in industrial era thinking.  Little has been done to modernise the institution itself, although much has been done of course to improve what hospitals do. We also know that hospitals account for a considerable carbon burden and consume a huge amount of energy since they operate 24 hours a day. We know that as labour intensive institutions they suffer from the challenges all such organisations face as they try to improve operating practices and reduce running costs. Healthcare delivery is characterised by regulated cartels, which serve both to protect the public, and protect professional practice from incursion by other health professionals.  A bit like an early 20th century factory with craft guilds.

We should care because these institutions need to become smarter in the use of modern technologies and practices, but this process is slow and cumbersome, and while they evolve, the taxpayer is faced with paying the costs of institutions which in many cases should be replaced. This is not to say that those who lead hospitals are not focused on these issues, but only to say that their job is not easy and with the many vested interests around, challenged.

What would be refreshing would be leadership for clinical workflow change to come from the professions themselves, due recognition of their need to evolve and reform rather than simply protect the status quo.  We need these groups to drive change in healthcare, rather than waiting for politicians or Ministries of Health to set the agenda. Of course, informed and empowered patients will eventually not put up with much of the nonsense that confronts them when they seek healthcare, but that is another story.

What will they look like?

We are left with wondering how to improve how they do what they do.  Enter ‘smarts’. This brings together a constellation of forces currently abroad in the world, ranging from automated building management systems, smart grids, energy recovery systems, to wireless technologies in hospitals to remove the wires.

Coupling smart systems together creates networks that can link patients in their home to monitoring facilities and first-responder capabilities. With the added advantage of wireless, we have untethered remote monitoring.  In the end, we have real-time healthcare.

Smart hospitals will not need to define themselves in terms of their geography or location, that is in terms of buildings. They will define themselves in terms of two factors:

  1. their capabilities and
  2. how they deliver these capabilities.

Indeed, the organising logic of the modern hospital will be replaced with one akin to a dating agency — it will link people with needs to capabilities to meet those needs — built on a sea of clinical, and patient information, and connectivity to various organisations that can deliver the services (healthcare) that is needed.  This breaks the current approach to vertical integration (based on the industrial conglomerate model) and replaces it with the virtual hospital, a network of focused and tasked organisations.

I had scoped such an approach to a redesign effort for a teaching hospital, which would have replaced a campus model (mainly an old building and some attached add-ons) with a distributed and electronically-linked (ehealth stuff here)  network of perhaps 24 centres scattered across a city of a million or so.  But industrial era logic prevailed and they went with the single building.

I guess we won’t get smart hospitals until we have smart planning.

The wordmark of the Government of Ontario, fea...
Waiting for the e-health revolution

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 90 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.

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