Monitoring your disease activity

Asch et al. Automated hovering in health care - watching over the 5000 hours. N Engl J Med. 2012 Jul 5;367(1):1-3. Epub 2012 Jun 20.

A must read article; the following are excerpts

"The dominant form of health care financing in the United States supports a reactive, visit-based model in which patients are seen when they become ill, typically during hospitalizations and at outpatient visits. That care model falls short not just because it is expensive and often fails to proactively improve health, but also because so much of health is explained by individual behaviors, most of which occur outside health care encounters."

"Indeed, even patients with chronic illness might spend only a few hours a year with a doctor or nurse, but they spend 5000 waking hours each year engaged in everything else — including deciding whether to take prescribed medications or follow other medical advice, deciding what to eat and drink and whether to smoke, and making other choices about activities that can profoundly affect their health."

MS is no different!

"The increasing attention being paid to those 5000 hours takes various forms. Employers are focusing more on employees' wellness — how they eat, whether they smoke, and how much they exercise. Medication adherence has become a more important goal, thanks to growing recognition that many people with chronic conditions fail to take their medications regularly and therefore do not get the benefits that health care can provide."

Adherence to DMTs is a major problem in MS. 

"Conventional approaches to improving patient engagement along these dimensions have been personnel-intensive — using visiting nurses or clinically staffed telemedicine services. Although results have been mixed, in general these programs have not fulfilled their promise. One problem is that using personnel in hovering is expensive and therefore difficult to scale up and to justify, except for the very sickest patients, some of whom might be too sick to benefit. Another problem is that initiating and maintaining patient engagement is difficult."

MS can be different.

"Three recent developments suggest that automated hovering may offer promise. First are early efforts at payment mechanisms that support more accountability for health outcomes — including non-reimbursement for preventable readmissions and bundling of payments around the goals of care rather than encounters. These changes provide a financial engine to support automated hovering initiatives."

Nothing like a financial carrot to engage the medical community. 

"The second development is our deepening understanding of behavioral economics and the reality that although most people want better health and typically know what it would take to achieve it, the desires, distractions, and urgencies of the moment often get in the way of pursuing what's in their own long-term self-interest. Behavioral economics explains why people are predictably irrational and provides tools for redirecting their behavior with carefully deployed nudges and financial incentives."

Are MSers different? I doubt it.

"The third development is the expanded reach of both sophisticated and simple technologies — cell phones, wireless devices, and the Internet — that can help health experts connect to people during their everyday lives. Neither wireless devices nor behavioral economics were part of the disease-management programs that have produced mixed results in the past."

This is why I am pushing the agenda of self monitoring (please complete the two polls on the right if you have not done so already). NHS Improvement, via the QIPP initiative (Quality, Innovation, Productivity & Prevention), is trying to get us to adopt new models of care. We need to have a holistic approach to the management of MS and start to think outside of the box. The traditional model of 6 or 12 monthly outpatient follow-up appointments is broken; we need something new. 

I love the concept of crowd sourcing. Are there any readers out there who run software companies and have resource to fund the development of an MSer led site to monitor your disease with as little input from your medical team as possible? We need metrics on how MS impacts on your life and how medical interventions affect these metrics. For example, if you are prescribed fampridine for walking difficulties does it improve the quality of your life? Does fampridine reduce falls? Does fampridine prevent fractures? Commissioners or payers want to know this information; it is not adequate simply to say that fampridine improves my walking therefore it is an effective treatment. What we want they want to know is how does improved walking speed impact on your life and the co-morbidities (falls and fractures) associated with walking problems. 

Metrics is the new buzz word; having data is power. 

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