More Ideas on Research Driven By The Patient Experience

A few days ago I blogged about my patient perspectives on a patient-partnered research agenda.

Since then I have had some more thoughts of examples of specific research questions and areas that might come out of the day to day experiences I have had with treatment and symptoms.  This is one of three areas suggested in the prior blog.  (Note: I am not a research scientist, so it may be that lots of what I ask for is already going on.  If so, hurray, and the question becomes how to share that with patients and their day to day providers.)


I have often shared that even through exhaustion is recognized as the worst symptom of my cancer, it was my shrink who came up with an approach of using Ritalin.  I would probably not be writing this without the energy that gives me.

So, I wonder if there is any systematic research on alleviating exhaustion, the same way there now is about dealing with pain.  A 2002 paper concluded:  It is hard to draw conclusions with regard to the relationships between fatigue and disease- and treatment-related characteristics, because these relationships are seldom properly investigated. Relationships between fatigue and psychological, social, behavioural and physical factors have been established in several studies. However, most studies focused on the depression-fatigue association. Finally, most intervention studies to reduce fatigue appear to be successful, but the follow-up analyses are lacking.” 

There is certainly research about exhaustion, but none that seems to have impacted treatment, at least that I know of.  I would love to see some proper random studies of different exhaustion treatment approaches.  My own experience has been that the exhaustion is hard to predict and understand.  Sometimes food plus Ritalin wakes me up — sometimes I am still exhausted.  Anyway, research would surely help.

Communication Capacity

At the risk of betraying my own ignorance, I have observed what seems to be a relative lack of focus on how to maintain communication capacity.  There is certainly plenty of research going on deafness and on, and neurologists think about the ability to talk and type.  But I note that I know of only one person in our retirement community who look her own life, and that, she explained in a letter distributed after her death, was because the progressive neurological disease from which she suffered would inevitability cut her off from communication.  So research on the general topic of communication capacity optimization would be really important to many of us.

Treatment and Procedure Pain

Again, while it is obvious that providers take pain minimization very seriously, I think there needs to be far more attention on how to do this at the procedure specific level.  I have had two prostate biopsies, and about four bone marrow aspirations.  Reputations notwithstanding, the prostate procedure was far worse.  I suspect that is because its a male world, and we feel unable to make a fuss.

About one bone marrow procedure, not conducted at my normal hospital, the less said the better.  They were using a mechanical device to go into the bone, and it sounded like a Black and Decker drill.  As my grandson later pointed out, I should have said, “No thanks I already have one.”

Seriously, the pain level  of that procedure varies enormously.  I assume there are lots of factors, of which technician skill is probably the most important.  Interestingly, at Hopkins, they have a policy that no-one is on for more than a day a week doing that procedure, because of how stressful it is to do it.  That’s a considerate approach all around.

More generally, however, data on how patients experience all these procedures, what causes variation, what palliation or technique changes might help, would all be useful.  (It has, for example, struck me that the pain is worst at the beginning of the bone procedure, when the pressure seal is broken.  I have wondered if the pain is associated with a difference in pressure inside and outside the bone, and if there might be ways of minimizing that.

Even blood draws.  How many technicians ask the patient which locations are the least painful?  Or how a particular draw went?  I have one nurse whose draws are painless.  I asked her why.  She said that she is diabetic and had had to give herself an injection every day throughout her pregnancy.  She should be training everyone, and she should be asked to create the generalizations for pain-free blood draws.  She seems to know them, bless her.

It could be interesting to think about what kind of process would get the best possible lists of these kinds of areas, and then figure out how to bring existing knowledge and expertise into the picture.



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  1. Pingback: Launching My New Patient Partnering Blog | Richard Zorza's Access to Justice Blog

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