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. 

9 thoughts on “Monitoring your disease activity”

  1. Thankyou, very interesting. Awaiting Fampradine 3 month trial which I will have to part fund. Will keep a record of impact on wider lifestyle (if there is any..) x

  2. It might be worth finding out whther the MS Society could help with the crowd sourcing question, perhaps through posting on its forum – ?

  3. I totally disagree with the self-monitoring agenda. From the results of your current poll, it seems that there is a sizable number of MSers who are also against the idea.I find it shocking that Pam has to contribute towards the costs of getting on to a fampridine trial. It is ethically wrong and flies in the face of good doctors’ ethics. The NHS’ mantra is for treatment to be free at the point of delivery yet she has to pay from her own pocket to facilitate a drug that may meet a crucial unmet need. The NHS is more than willing to now fund the removal and replacement of vain women with fake boobs as a result of unproven worries regarding leakage, yet us MSers with walking problems who are on no medication are deprived potent treatments on cost grounds. (If one has had breast implants due to the fact they have needed reconstructive surgery because of cancer or such then that is a different matter.) Likewise, junkies that make a lifestyle choice to get addicted to drugs are provided with quality medication and aid at tax payers’ expense, yet so many of us MSers are neglected. It won’t surprise me if cosmetic extravagances like corrective laser eye surgery go on to develop long term problems and come to the NHS for aid. I bet the NHS will find money to help them out.We MSers do a good enough job of monitoring how we feel and are affected by our disease, thank you very much. The failure comes from the institutions and consultants that do not take our condition seriously enough. I don’t need to have an app to quantify how bad I’m doing as a result of MS, what I need is for people to do their jobs and put effective things in place to improve my situation, whether that is via drugs or adaptations. The NHS is not prioritising MS and the notion that some poxy ‘app’ will better that judgement is laughable. The problems lie in an institution that ostensibly is created to look after us, yet completely ignoring the needs of millions. 16% of people needing NHS care have some sort of neurological illness yet only 3% of its budget is spent on neurology. That is a dreadful reality.Screw the concept of crowd sourcing. Screw data gathering. Screw all these box ticking exercises. They have lifetime of data yet they still don’t consider us needy enough. Having some crappy app will not improve our standing one iota.Don’t waste your time people. All this crowd sourcing rhetoric is just kicking the ball into the long grass.Pam, I do hope that famridine works for you and I hope your personal contribution is kept at a minimum.As if having this taxing disease wasn’t enough, I can’t believe they’re asking for money from you to get hold of drugs. (If you’re an American then I guess that’s a different story.)

  4. I can't believe the NHS is charging Pam for the trial. This must be a private trial aomewhere, and even then she shouldn't have to pay

  5. I have changed my mind and am finding myself agreeing with Boycott the App.If the NHS cant see that improved walking speed as a result of taking Fampridine is a good thing and impacts greatly on an MSers wellbeing, then I guess the NHS is not fit for purpose. The app will do nothing to change institutional myopia.The system is geared against us. NICE is not a body to help patiants, it's an arm of Whitehall that's there to help save money.Agreed, screw the app!

  6. Re: "I don't know if there is any compatability between what you are proposing and this already existing tool. I mention it in case you are not aware of it."Know it is not PatientsLikeMe; there have been several threads on the blog about this website. Several users had problems with online bullying when they spoke out against CCSVI and deleted their accounts.

  7. I remember only one previous thread about PatientsLikeMe think Maria's feedback will apply to any self-monitoring initiative. Like her, many people with mild disease will find it too much bother to update their status regularly. Since the information is for statistics collection and not to help them personally, I doubt even people with serious problems will do it. Or people will start and then slowly stop. Maria's CCSVIer point was related to the patient community aspect of patientslikeme and the fact that your data is visible to others members. Patient information should be confidential except perhaps from the medical team. Though (from my experience) the medical team is not interested in detailed symptom histories etc, because they cannot use that information

  8. Re: "I think Maria's feedback will apply to any self-monitoring initiative."This is initiative is being driven by the NHS Commissioners or payers; they want to know if they are getting a good quality service. For example length of time it took to diagnosis, reducing A&E or casualty attendance. reducing healthcare episodes, preventing falls and fractures, keeping people in work, reducing relapses, preventing bladder infections, preventing falls, MSer satisfaction, flexibility of services, fatigue levels, use of DMTs according to national guidelines, etc. This is not something that is going to go away; either we do it well or we don't do it all.

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