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[...] management of chronic diseases. Some service providers, however, aim to do no such thing.” Article Brian Dolan, Mobihealthnews, 14 May [...]

It depends on what action can be taken. If the data can help the patient manage their condition ( and most conditions have many elements of self-management) then it should be collected primarily for the patient rather than for a health care provider. It may still be useful that the collection of data is automated if the patient wants it that way.

As a health care provider I can do little with this kind of data without the patient’s engagement.

Anne Marie,

Thanks for the comment — and I think you are right — remote monitoring services need to maximize automation but still be flexible enough to customize for individual users. When possible, then, it should be up to the patient.

That’s the ideal, but for companies that pursue one strategy over the other, I think there will be a good amount of pushback from caregivers and users alike. The end result cannot bypass the patient’s input or engagement, but it also still needs to be very easy to use and accurate.

[...] Automation sacrifice Patient Empowerment? Brian Dolan at Mobihealth discusses one of the problems that i notice many people have when they try and imagine how a [...]

[...] Does automation sacrifice patient empowerment? [...]

As a ‘connected’ patient with a chronic disease what I am looking for is a program (open source software please) that will track all those things that I need to be tracking, and making use of as much as possible of the equipment that I already own such as pulse oximeter, blood pressure monitor, Piko6 spirometer, weight scale etc. and, of course, computer.

It should know what medications (and supplements) I am taking, track my exercise and have a good basic diagnostic ability – enough to tell me I really need to see my doctor as my ’signs’ are deteriorating, or that I should be exercising more. It should talk to/be accessible to my healthcare provider and any EHR system used by the provider, and be as secure as my contact with my bank account.

The argument that I might not input correct data is specious – when I talk to my doctor he ASKS me what my symptoms are before he takes any action at all.

I think that automating any of the data collection would not only waste money but also reduce my own empowerment over my disease.

Dear Chris,

Maybe you explain more in detail what you mean: as connected patient you are looking for some automation that helps you in your diagnostic ability. On the other hand you say that it would reduce your own empowerment over your disease. Do I understand correctly that you would like to master the data yourself and not have it send automatically to the care professionals?

I wonder if automating data collection would not be very nice and helpful for yourself as well: you could also display graphs and trends.

Is your opion characteristic for your fellow patients or do you think that the majority would have different opinions?

I believe that the simple act of transposing the data from a measuring device to a recording system prevents (or at least makes less likely) simply ignoring the actual data and letting a wireless device transmit it without any mental connection on my part. Of course viewing data and graphs should be a part of this.
The system (on my computer) should track the data and have sufficient “artificial intelligence” to flag when changes in the data trends are great enough to be of concern. At that point tell me and I will arrange to visit ‘doctor’ for guidance. He should not need to be reviewing my data daily (not enough doctors in the world to do this for everyone!) but could access it periodically or when I call for an appointment to guide his diagnosis.
I should add that, while I have severe COPD use oxygen 24/7 and have several stents in my heart, I am still active and a long way from considering “assisted living” or a nursing home.
I wish I could answer your question about fellow patients, but I really do not know. Some, probably the majority, would surely totally disagree with me but I think a significant number would feel the way I do.

Chris,

Not to speak for Rajiv, but it seemed from our discussion that he would agree with you and designed his Zume Life service and portal with less automation because he wanted to maximize patient engagement.

Great discussion — thanks for your comments.

Brian

Brian — thanks for the nudge to speak up :-)

At Zume Life we did not choose “less automation”. Rather, we choose to start with the current method of user-entered biometric data, rather than automatic sensors, because we need a solution that works for people TODAY. As Chris Wigley notes, he already has a lot of equipment –a pulse oximeter, BP monitor, spirometer, scale, etc. We believe it is very important that people, such as Chris, be able to continue to use the devices they have. It is unreasonable, we believe, to insist that people purchase all new equipment and/or to limit our service to only the few who have the latest technology.

Over time, we will definitely add functionality to automatically collect data from sensors, which would likely be more convenient for those people who have the latest sensors.

I whole-heartedly support two other points that Chris Wigley makes. The first is that there is value to the individual in taking a moment to note his biometric (weight, BP, etc) as he transposes the data. Not necessarily to dwell on every data point, but rather from being aware of the metric. Much as my friends with Prius cars have benefited from seeing their current gas mileage on the dashboard (and so being aware of how they’re driving).

The second is this silly notion that patients can not be trusted to enter their data accurately, that they might lie. If you can’t trust the person on this, you can hardly trust them on anything else about their health — whether they’re taking their meds, how they are feeling, etc. There is of course the possibility of data-entry errors. If each and every data point is critical, then the person’s health is probably so strained that “self-care” technologies like those from Zume Life are probably inappropriate anyway. Otherwise, occasional outlier data points can safely be ignored (or, as technology improves, the system could immediately ask the person if the entry is correct).

Finally, my concern about the conference’s focus on automated data collection was driven not so much by the issue of taking the patient out of the loop in the way discussed above, but rather the fact that these sensors at best capture only a limited range of important data. To truly understand the person’s health, we also need to understand many aspects of their health, their feelings/moods/pains/etc., their activities, and their context/environment (physical, social, environmental, occupational, etc.) that are likely not amenable to automatic sensors. Only a person can tell you these other important things. As an ex-NASA scientist, I know how hard it is to figure out what happened when something goes wrong with modern airplanes, even though we have zillions of sensors and tons of data. Our bodies are far more complex and our biometric sensors far fewer and inaccurate. Absolutely let’s cheer all sensor advancements! Let’s just not get carried away in thinking that we can rely on these sensors to tell us everything we need to know.

Regards,
Rajiv

Rajiv,

Thanks for the clarification on Zume Life’s strategy. I think your point that often biometric data is not enough — that we, patients, are not the sum of our biometric data — is especially important for data collection, remote monitoring and patient engagement.

Brian

By the way, you can read more about the thinking behind our system in the white paper “Requirements and Design Implications for Mobile Self-Care Systems” at http://www.zumelife.com/white-papers.php — this was my contribution to the recently published book “Texting 4 Health”, edited by BJ Fogg and Richard Adler.

Cheers,
Rajiv

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