Patient-Centred, Patient-Controlled Health Care: How the System Should Work

verna allee pharma value network
Yesterday I commented on the intriguing health care ‘value chain’, shown above, that Verna Allee’s group has constructed, seen from the perspective of Big Pharma. This perspective assumes that ‘the patient’ is basically helpless, passive, ignorant and uninterested in taking an active role in the management of his/her own health. That’s a very patronizing perspective, though I admit I know many patients who give it credence.

I would argue, however, that this is changing, and changing quickly. What is precipitating this change is:

  • The growing, glaringly obvious dysfunction of the health care system in most countries (expensive, bureaucratic, two-tier, motivated by profit not well-being, distorted by wealthy corporate lobbyists’ self-interests, oriented to treatment not prevention, under-resourced etc.)
  • The availability of information on the Internet that allows people to start to take charge of their own health management (prevention, self-diagnosis, self-treatment)
  • Increasing awareness that preventing disease makes more sense than waiting for it to occur and then treating the symptoms
  • A growing epidemic of chronic, diet-, lifestyle- and environmentally-related diseases that the traditional health care system seems unable to cope with and uninterested in resolving (since more repeat customers is good for business)
  • Growing skepticism of the motives and effectiveness of Big Pharma’s ‘synthetic drugs for every disease’ approach to health care
  • Growing fear that public systems are incapable of handling future disease pandemics, so self-preparedness is essential
  • A willingness by more enlightened health practitioners to involve the patient/customer more in resolving health issues, as they realize (a) patients know more about their body, health and symptoms than the practitioner can ever hope to know and (b) by all measures this is a more effective approach
  • In the US and other countries lacking universal health care, an increasing number of people can no longer qualify for or afford public health care services, so they have no other choice than to look for alternative approaches (both good and bad — many quacks are exploiting this situation to sellphony, even dangerous ‘alternative cures’ to ignorant, desperately ill people).

Last week I contrasted, a bit simplistically, the traditional approach and the emerging ‘Edge’ approach to being healthy:

  • Traditional approach: Relying completely on doctors & synthetic drug-makers (Advantages: you get fast results; it’s easier, requiring little time or energy investment; and it’s cheaper, if you’re insured)
  • Emerging approach: Self-directed, largely self-diagnosed and self-treated, prevention-focused, natural holistic health care (Advantages: you’re sick less often; you’re more self-sufficient; you get better diagnosis & treatment; and if you’re not insured, it’s your only option)

This emerging approach is entirely consistent with the recommendations of the US National Institute of Medicine’s 2001 Crossing the Quality Chasm report which laid out these ten ‘rules’ to govern effective health care:

  1. Care based on continuous healing relationships. Patients should receive care whenever they need it and in many forms, not just face-to-face visits. This rule implies that the health care system should be responsive at all times (24 hours a day, every day) and that access to care should be provided over the Internet, by telephone, and by other means in addition to face-to-face visits.
  2. Customization based on patient needs and values. The system of care should be designed to meet the most common types of needs, but have the capability to respond to individual patient choices and preferences.
  3. The patient as the source of control. Patients should be given the necessary information and the opportunity to exercise the degree of control they choose over health care decisions that affect them. The health system should be able to accommodate differences in patient preferences and encourage shared decision making.
  4. Shared knowledge and the free flow of information. Patients should have unfettered access to their own medical information and to clinical knowledge. Clinicians and patients should communicate effectively and share information.
  5. Evidence-based decision making. Patients should receive care based on the best available scientific knowledge. Care should not vary illogically from clinician to clinician or from place to place.
  6. Safety as a system property. Patients should be safe from injury caused by the care system. Reducing risk and ensuring safety require greater attention to systems that help prevent and mitigate errors.
  7. The need for transparency. The health care system should make information available to patients and their families that allows them to make informed decisions when selecting a health plan, hospital, or clinical practice, or choosing among alternative treatments. This should include information describing the systemís performance on safety, evidence-based practice, and patient satisfaction.
  8. Anticipation of needs. The health system should anticipate patient needs, rather than simply reacting to events.
  9. Continuous decrease in waste. The health system should not waste resources or patient time.
  10. Cooperation among clinicians. Clinicians and institutions should actively collaborate and communicate to ensure an appropriate exchange of information and coordination of care.

So what would a health-care system ‘value network’ look like that honoured these rules? Certainly not like the one above. Here are two charts that show, first, how I think an increasing number of (cynical) patients see the ‘value network’ operating today, and then, below it, what a reformed health-care system ‘value network’ would/could/should look like:

Health Care Value Network

The significant new ‘ingredient’ in the bottom chart, the Health Info ClearingHouse, is an example of what I have called a peer-to-peer information exchange. The ClearingHouse would be largely Internet-based (though also accessible through other media), not-for-profit, and not owned or controlled by anyone. It would aggregate and objectively assess health information provided by everyone in the system — customers (patients), doctors and other health-care providers, pharma companies, regulators and other government bodies etc. It would allow us to second-guess the hype we’re getting from for-profit providers and bureaucracies, get second opinions, and form support groups and share information and resources with other customers dealing with the same ailments.

Under this system, as in most countries today other than the US, Big Pharma would no longer be able to ‘push’ its drugs through the mass media (“despite these 147 side-effects, ask your doctor if new overpriced toxic XanthamPlus is right for you!”) nor would it be able to bribe doctors with ‘incentives’ to prescribe its brands.

The other big change would be in the relationship between doctors and other health-care providers and their customers (mere ‘patients’ no longer). The new relationship would be a continuous one, with factual information (data about customers’ health, analysis reports, new medical reports, etc.) being transmitted continuously between the customer and the health-care provider (perhaps even, as in some places in Japan now, automatically and electronically). The three-way information flows between customers, health-care providers and the ClearingHouse would enable the establishment of a co-developed ongoing personal program for every individual that would include (a) activities to prevent illnesses from occurring, (b) activities to self-diagnose illnesses in their very early stages, and (c) activities to treat illnesses when they occur. These would be joint activities with the customer actively engaged in the process.

Such a system is almost a no-brainer: it would generally result in a healthier populace and much lower costs to the system. But its evolution has been, and will continue to be, blocked by the special interests who would lose out in such a system: Big Pharma would find less need and market for its products, and its influence in the system would be drastically reduced. The HMOs, of course, would be out of business. Many of the lawyers who make their living on both sides of patient-health-care-provider litigation would also be out of business, since along with greater control over their own health, customers would also have to accept more responsibility, and not be able to hide behind ignorance and helplessness when suing doctors and drug companies. Doctors with God-complexes would not handle such a system well. Predatory snake-oil and wonder-therapy ‘alternative’ health-care providers would find themselves exposed by the ClearingHouse.

As you can see, then, there are plenty of reasons why the current dysfunctional system continues to squander our money and our health. And this is another complex system, that cannot be fixed by government fiat or by any group acting alone. We need to get to the system in the bottom chart above by evolutionary means. That evolution needs to start with bottom-up awareness, organization and information exchange, probably beginning with both (a) an insistence, when dealing with health-care providers, on complete two-way information exchange, total honesty and active customer involvement in all assessments and decisions, and (b) the establishment of the beginnings of what will eventually be the Health Information ClearingHouse. Instead of opting out of the system in favour of alternative medicine, we need to demand a greater role in our own health management from practitioners, and refuse to take no for an answer. My guess is that many practitioners will welcome rather than resist this change.

In other words, we need to become our own holistic ‘general practitioner’. We cannot expect doctors to know what is happening, and what we are doing, in alternative health-care and in our own lives, unless we tell them. We need to tell everyone we involve in our health what everyone else we involve is doing and saying and prescribing, and what we are doing about it. That means that what our doctor, our physical and/or psychotherapist, our herbalist, our pharmacist, our personal trainer, our dietitian knows, they all should know, and we should know not only what they have told us to do, but why, and what else they considered and ruled out.

And there, of course, is the rub. This requires more candour than a lot of us are willing to exhibit, and an investment in time and energy and learning that is more than many of us areprepared to make.

But until we do, the system will remain dysfunctional and insolvent. And we’ll keep getting needlessly ill.

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4 Responses to Patient-Centred, Patient-Controlled Health Care: How the System Should Work

  1. Hi Dave, I love your blog, although this post is not one I would normally comment on, however I would like to know what you use to produce the great diagrams!

  2. Mornig DaveThis is where we are going (Robin and I) I think that it is inevitable. More and more people I come into contact with tell me how their regimen of drugs has in the end made them more ill. But merely gossiping with each other is not as good as becoming truly informed. Hence your idea of the Exchange. I wonder how such an exchange could be started? What would be the essence of its core that would ensure that it could be trusted?

  3. As a medical student, the current healthcare situation certainly concerns and distresses me greatly. I would love to see a peer-reviewed and moderated “Medipedia” much like Wikipedia on the internet, which I think would be as close to your idea of a non-profit, unbiased source of information. If I had any skills in the computer sciences (I am incredibly electronically inept), I would start one. While there are many databases out there, each has an agenda and so some patients are wary of them (and some sites deserve wariness), including the government-based sites. I tihnk the peer moderation would be more difficult than some Wikipedia entries (“governors of new jersey”), but less than many others (“evolution”), so I see it as a very feasible possibility.

  4. PaulSweeney says:

    I think a core element here is the ability to define and manage the information and interaction flow in relation to your own ongoing care. Key to this (in turn) is the trusted source, and the value you place on their insights, advice etc. Finally, the blind spot: their are ways in which we could “volunteer” our information to others so that we can be monitored (i.e. I am dieting, excercising and not loosing weight, my sisters are, what’s wrong? your designated coach sees the grocery list, your daily food log, and your excercise data from the gym, and hey, you know your not actually going to the gym as much as you think!). Simplistic example, but at its core is the ability to nominate other network participants to “med-i-digg” you, so that you have some soft of control over those blind spots.

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