Biometric Measures of Pain and Self Reporting of Side Effects

A few days ago, I blogged about the dificulty of self-reporting side effects.  The AP has just run a story on how it may be becoming possible to measure pain bio-metrically.

The National Institutes of Health is pushing for development of what its director, Dr. Francis Collins, has called a “pain-o-meter.” Spurred by the opioid crisis , the goal isn’t just to signal how much pain someone’s in. It’s also to determine what kind it is and what drug might be the most effective.

“We’re not creating a lie detector for pain,” stressed David Thomas of NIH’s National Institute on Drug Abuse, who oversees the research. “We do not want to lose the patient voice.”

Around the country, NIH-funded scientists have begun studies of brain scans, pupil reactions and other possible markers of pain in hopes of finally “seeing” the ouch so they can better treat it. It’s early-stage research, and it’s not clear how soon any of the attempts might pan out.

“There won’t be a single signature of pain,” Thomas predicted. “My vision is that someday we’ll pull these different metrics together for something of a fingerprint of pain.”

Obviously, there is still huge amounts to be leaned not only about the measures, but critically their relationship to how we as patients actually experience them.  I was very encouraged to see the quote from David Thomas “We’re not creating a lie detector for pain.  We do not want to lose the patient voice.

Obviously, this will require full involvement from patients in the research design, as well as making sure that those who are trained to use the new measures are fully informed of the relationship of patient experience to the numbers.  Its not hard getting researchers to understand, but less clear that harried caregivers will not be attracted to shortcuts.  In fact, quite apart from research into the reliability of the numbers, we will need research into what happens in the field –“first do no harm.”  I see this new ata ass potentially strengthening the patient partnerhsip, not weakening.

As some who has sat as a patient voice on numerous health care working groups, I have complete trust in the intent of the professional participants, but I have also seen how powerful that unified professional voice can be, unless we understand the full dynamics.

I hope that my caution does not undercut what I see as very good news here.


The Patient Perspective on Integrated and Interoperable Medication Lists

As many know, the Office of the National Coordinator for Health Information Technology at HHS ( directed by Dr. Vindell Washington) has been working on the whole vexed problem of integration of data from different providers. More information on the agency is here.

In particular, it has been focusing on one of the most urgent problems from the point of view of us patients is the lack of any ability to get integrated information on all of our medications, regardless of who prescribed them, and where we obtained them — let alone what we should be doing with them, and when.  This is obviously a particularly complicated and significant for those of us with multiple conditions.  (By the way, almost all seriously ill people are considered to have multiple conditions.)

So it is exciting that there is now a focused effort at HHS, known as the MedList Project, to develop such online tools.  It takes no great  genius to recognize the huge potential to improve patient care, reduce errors, reduce unnecessary costs, and minimize adverse drug interactions, that the initiative offers.

So, I was excited and honored to be part of discussion organized at HHS to help them find out what patients wanted and needed.  It was one of the most exciting and stimulating discussions that I have been in for a long time.  Here are some of the ideas that really struck me.  Of course, many may not be practicable or just not happen, but it is good to know that thinking in a broad and visionary way is happening.

Making sure that the list is truly integrated — that it includes information from all providers and prescribers, and that it includes nonprescription drugs.

Including updating tools so that information about updates flows routinely to all who need to know about them, and so that accuracy is maintained.

Eliminating the current endless repeated updating of the prescription list every time we see a provider anywhere.

Letting users change the display format of any medication list, so that they can see it in a table, in a list, by when in the day to be taken, the cost to them (or the insurer), by type of likely side-effect, etc.

Making it easy for users to find and deal with the many different names that are used for drugs.

Integrating the descriptions of the pills and packaging, and indeed including a tool that lets you put the drug in front of the camera of your device, and get a full read-out on it. (Imagine how many misuses of medication that might help avoid.)

Including tools so that we can see options for the scheduling of our medications as they relate to meals, activities, and sleep.  Right now, if you are lucky, one of our providers sits down with us and goes through our “day,” making suggestions, but it is an informal process and likely to be ad hoc.

Including in the tools an ability to ask for suggestions for scheduling alternatives to deal with particular problems.  For example, if you feel nauseous before or after a meal, or if exhaustion as a particular time is a worse or more significant problem, then you could tell the tool, which could then make alternative suggestions.

Having the tool notify providers when you change your schedule or what drugs you take.

Integrating the tool with the smartphone reminder and confirmation systems.

Including links to all the information on side effects and instructions, and providing links so we can ask for more detailed instructions.

Facilitating integration with pharmacies at medical institutions and the retail industry.

Facilitating integration with menus at residential communities to watch for possible issues.

Including tools to report possible side effects, and perhaps even to allow patients as well as experts to look for patterns in such reports.

In any event, I hope that folks agree that these would make a huge difference.  Please make additional suggestions in the comments section below.  I will make sure that they get to the appropriate folks.

In any event, it seems to me that this is a fabulous partnering opportunity.  First, we, as patients, can help make this as good as possible.  Secondly, it will provide us for ways to input data that will help the professionals make the system better.  Thirdly, on a case by case basis, it will help us partner with our own providers to improve outcomes.  Compare an earlier blog on Advanced Care Planning Tools.


When The Team Knows The Patient As a Person With a Life History

A few months ago, I had been visiting a deeply humble but very eminent scientist who was in the last stages of life in our retirement community, and on the way out, I asked the staffer taking day to day care of him, “do you know who that is?”  She had absolutely no idea, and I briefly told her of his contributions, some of which she would have know of, at least in a very general way in terms of the impact on her life.

She beamed, and was clearly proud to be taking care of him.  I am sure that the care did not get any better medically, but I bet it was a bit more joyful.

This is just a nice example of the broader approach described in a recent article in the Washington Post.  As described, a retired journalist, starting first with her father:

.  .  .  offered to use her professional skills to write her father’s story for [the staff at his dementia care facility] – including the bit about how he was once a part-time driver for Winston Churchill and how he liked to amble around the cypress trees and lavender fields in the south of France, where he had a country home.  “[The caregivers] loved it,” she recalled. Knowing personal details of her father’s life helped his caregivers understand trigger points that could upset him and references that might please him. “It completely transformed his care.” The experience was so powerful that Newton-Small began compiling stories for others, first as a favor to friends and then as a start-up business that provides memory care facilities with online profiles that comprise personal anecdotes, photos, videos and recordings of favorite songs. This fall she left her reporting job to pursue it full-time.

I do not think that this should be limited to dementia patients, and I suspect that at least in many multi-level care communities the task can alternatively be done by volunteers, making it easier to spread it quickly, but the general point is dead on.  You do a better job and certainly a happier job when you really know about who you are taking care of.

For patients who can communicate, one of the very best ways to bring them into partnership is to find out about them.  The time spent, in other than very brief relationships, will be more than recovered in more effective communications and understanding on both sides.

It would be interesting to study if training medical staff on that obtaining broader view of “medical history” would have an impact on all kinds of outcomes.

The retired journalist believes that:

Having professional journalists write the profiles is crucial, Newton-Small said, adding that when that task is left to the families, “some are well-written, but the vast majority are terribly written, and families take months and months to fill them out. You have to find somebody to synthesize the information.”

That would be an interesting thing to test, and may depend on a lot of factors.  The argument for those with expertise in research and writing is probably strongest for dementia patients.  I do know that in our retirement community, also near DC, the group that produces our monthly newsletter routinely includes life profiles of most new residents.  Some of them are retired journalists, but many are from other fields.  Take a look for yourselves.  Several years of the publication, the Collingtonian, are online here.  You will probably have to scroll down to get to the incoming resident’s profiles.  They are amazing.  We are talking about how to make sure those profiles get into the hands of those taking care of them, to the extent that residents and families want it.  Maybe those profiles could be linked into the Electronic Medical Record.

Every caregiver should be proud of what they do, and we should all help them feel that pride.  And the more patients know about their caregivers, all the better too.

NQF “Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care” Released

Today the National Quality Forum released its Strategies for Change – A Collaborative Journey to Transform Advanced Illness Care. As the announcement says:

NQP’s Advanced Illness Care Action Team, which includes 25 patients, care providers, physicians, nurses, spiritual advisors, and other experts from the public and private sectors, developed the issue brief. More than two dozen individuals and organizations that are leading robust initiatives to transform advanced illness care in the United States also provided input.

It is is a very rich document, with many insights and resources.  Rather than attempt to summarize it, I will instead list the lessons that I took from both the document and my participation as a patient voice in the process of bringing its ideas together.

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Patient First Technology

The AMA blog has a post under the fascinating title “Patient First Technology”

It reports that Harvey Fineberg, MD, president of the Gordon and Betty Moore Foundation, has urged the use of technology to put patients first.

He urges:

  • “Educating the public so that every individual knows what their entitlement is for the control of their own care and their own life destiny.
  • “Looking at the payment system, because if the payment system is going to pay up to, let’s say, $100,000 for a pill you need to extend your life … but will not pay for hot meals delivered to your home, we have a problem.
  • “Better development of the workforce; we need clinicians, doctors, and nurses who understand that the goals of the patient are what we begin and end with. . .
  • “Design model programs in communities, because institution-based systems will not solve this problem. . .
  • “A monitoring system to track the workforce and make sure the public is fully educated and prepared to do their part as well.”

Agreed, and excellent points.

But what’s special about technology that makes this possible? Some suggestions.

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