Minimally Disruptive Medicine

Richard Smith has written a hilarious blog on the memory clinics in UK’s NHS and his and his mother’s experience pursuing treatment for memory loss.  It is a fantastic narrative of a treatment that did not fit in that (a) forced a number of disruptions on mother and son; and (b) led to treatment that was not consistent with the patient’s circumstances.  Furthermore, the treatment was also not consistent with the patient values and preferences.  Minimally disruptive medicine + shared decision making = treatments that fit.

As we pursue our goal of minimally disruptive medicine, we need to have an eye on how we are going to recognize when we get ‘there’.

What does it feel for a patient with multiple medical conditions to experience healthcare that fits?  By fit we mean healthcare that pursues the goals of the patients in manners that are consistent with her preferences while demanding work, time, and attention that can easily be integrated with all the other roles the patient plays in their lives: mother, sister, wife, worker, friend, etc.

For some it means technologies that are placed at the ‘point of life’, i.e., at home, at work, in between.  These technologies, ubiquitous technologies, can monitor signs of health and disease and use of treatment and communicate this information to algorithms and caregivers who in turn act on this information to deploy a tailored treatment.  This treatment (which could be advice, support, education, or medicines) accesses the patient with minimal requirements from the patient and acts on the patient with minimal to no involvement or at times of the patient choosing.

There is out there the belief that patients with chronic conditions need to be aware of their disease in order to manage the disease effectively.  Putting the condition and the necessary treatments in the back burner without due attention leads to disease progression and loss of health (so-called denial state).  But what if treatments just worked without calling attention from the patient?  Will this be progress?  What do the “personal responsibility” crowd feel about such development?

What are the implications for diagnostics and monitoring?  Can these take place in ways that do not require patients to act on them to activate or submit for analyses?  What are the implications for treatment design?  What are the implications for direct patient examination (make an appointment and meet with the clinician taking time away — in time and space — from usual routines)?  What role may indirect patient examinations (asynchronous? at the point of life?  without patient participation?) play?

In the minimally disruptive medicine utopia, are patients allowed to forget they have multiple chronic conditions?  If so, what happens with the behaviors and actions, the ways in which the patient interacts with the environment, that are necessary to prevent further progression of these conditions or the appearance of new ones?  Isn’t being sick a motivator to avoid getting sicker?  If treatments become “not a big a deal”, will individuals loose the motivation to prevent chronic disease?

We welcome your wildest dreams and most careful consideration.  What does a life of chronic disease looks like when treatments just fit?

Jill Adams has written a very nice piece about the challenge before patients with type 2 diabetes seeking to decide how much they need to do to manage their disease and prevent complications.   The piece goes further and cites our group in seeking “good enough” diabetes control and mentions the work of being a patient.  Ms. Adams writes:

Montori notes that a good-enough blood sugar strategy would also ease the sheer time and energy it takes to manage diabetes. Treatment regimens — with frequent doses of pills or insulin, blood-sugar monitoring and doctor visits — are complicated and burdensome, particularly in patients who may be elderly and have other chronic conditions, such as high blood pressure and high cholesterol. One estimate of the time patients spend taking care of their condition, if they follow all the advice of their doctors, is 143 minutes per day. “That’s as much as a part-time job,” Montori says.

The link to the full article (LA Times, Oct 26 2009) is here

We just received great news!

The MDM team, led by Frances Mair just got awarded a grant from Chief Scientist Office of Scotland to conduct the project “Developing a conceptual model of the burden of treatment and the “work” involved in living with heart failure”. Other investigators mentioned in the award include Carl May and Victor Montori.

Here is the project summary:

This project grant is the first in a program of research developing the “Minimally Disruptive Medicine (MDM)” research agenda.  Poor adherence to treatment regimens and lifestyle advice may lead to an additional burden of poor health for chronic heart failure (CHF) patients, their families and the health service.  Non-adherence is often regarded as a problem of individual volition or about lack of patient understanding. However, CHF patients often have multiple co-morbidities – and generally face an increasing burden of work in managing their conditions. This work includes complex pharmaceutical regimes, frequent clinic attendances, lifestyle changes and self care responsibilities.

As this treatment burden grows, patients find it difficult to meet the demands placed on them. In this project we aim to identify, describe, and explain the work involved in living with CHF, through analysis of both archived and new CHF patient perception interviews.  We aim to develop a robust conceptual model of CHF work in order to inform the development of new points (and forms) of clinical intervention.

Here we go!

Focusing on the patients’ experience of treatment may lead to a new understanding as to why some patients cannot, despite their willingness and knowledge, follow treatment recommendations.  Our team is exploring the aspects of treatments that may constitute treatment burden.  Do you have some ideas?

For instance, in the United States, patients may need to spend time on the phone, sending letters and faxes, and waiting for responses to obtain new medications, refill other ones, and deal with denials of coverage by their insurer.

Are there ways in which the healthcare professionals can help patients by providing adequate assistance and by modifying the regimen to minimize this form of treatment burden?  How would they know if they have been successful?  Who are the professionals best suited for this work?  Social workers, pharmacists, lifestyle coaches, nurses, and physicians working in teams alongside the patient and their caregivers?  Utopia?  No, we think this is reality just around the corner.  Can minimally disruptive medicine teams positively improve the value of healthcare delivery?  What are your thoughts?

One very astute opinion leader, Gary Oftedahl, is finding this compelling.  Read his blog here.  He notes:

If we in health care are unable to make simple changes in workflows or processes within our care delivery systems, how can we expect our patients to make often complex, and complicated changes, which disrupt a life-long pattern of activity?

What do you think?

We had the opportunity to present on Minimally Disruptive Medicine at the Innovation Symposium (Transform) at Mayo Clinic on September 14 2009.  The video of the presentation by Victor Montori is here (scroll down to find it). 

Another member of our team had an AWESOME presentation as well — in fact the majority of the presentations of this symposium brilliantly organized and conducted by David Rosenman, my friend and colleague, were incredibly good and illuminating.   Maggie Breslin closed the symposium with a passionate call for meaningful conversations in healthcare.  Plain true and brilliant.  You can find that video at the same website.

Enjoy!

Let’s use the hashtag #minidm to tag posts about minimally disruptive medicine.

Thus to review recent posts in twitter on minimally disruptive medicine you can click here

When discussing who is at risk of being burdened by treatments, we have come up with a list…we are wondering what other groups people can think of:

• Individuals with limited familial or social support
• Individuals with poor overall or health literacy
• Individuals with many chronic conditions
• Individuals with treatments that require constant attention, e.g., implanted devices that call attention to themselves throughout the day, pills that need to be taken several times per day
• Individuals who travel far for healthcare
• Individuals who have to wait for healthcare: to park, in line, at the office
• Individuals who have tenuous health insurance who need to spend time arguing with insurance

Who else is in your list?

Here is a long video of the presentation to the community in Rochester Minnesota related to Minimally Disruptive Medicine.

See the Mayo Clinic news blog account of our paper in the BMJ with a video interview with Victor Montori.

That video is also below