Category Archives: patient centered healthcare

MS Medications, MS research, MS treatment, Multiple Sclerosis, patient centered healthcare, Patientslikeme.com, Uncategorized, understanding MS symptoms

Days of Miracle and Wonder in Patient Power

Patients like me was listed as one of the websites allowing patients to run informal trials on treatments (awesome to see the power of this site recognized!).  On the plus side, it is incredibly empowering.  However, the flip side is patients in clinical trials may use sites like this one to figure out they are in a control group and modify their treatment or drop out of the trial.  After all, who would willingly let their condition progress for the sake of a trial’s control group numbers?

An additional advantage of this spread of social networks tracking medical treatments and conditions is the earlier release of at least anecdotal evidence from those in the trials who are publicly tracking their condition.  I think of the information from posters on patientslikeme.com talking about Campath before the trials’ results were published.  By the time of publication, many following the patients in the trials had a good feel for the likely results.  Patientslikeme vastly shortened the dissemination time for results.  This model has the potential to drastically shorten the time between discovery of treatments and their use amongst the patient population.

The question which remains is what to do with the danger resulting from the removal of survey/testing methodology.  Will most patients understand the implications of non-response?  What does it mean when 20 people post about starting a therapy and only 2 or 3 chart it for years?  Did the others stop and why?  Are the two people in remission a sign the treatment could work, or is 10% the number of people likely to have a spontaneous remission without treatment?

How many of us will know enough to ask these questions before we ask for the treatment based on what we read?  We patients and our loved ones are desperate.

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Potential upticks in patient power have been happening across many fronts.  Last month I ran across a story from the U.K. where there was a proposal for drug companies to compensate patients if their treatments failed. http://multiple-sclerosis-research.blogspot.com/2014/06/will-pharma-compensate-if-their-drugs.html

On the idea of repayment if a drug fails, I think there are numerous issues with this in MS. How will we measure failure: new lesions, brain shrinkage, worsened quality of life, greater effective disability score, etc.? I ask this in all seriousness as I work with Patientslikeme.com to develop better measures for patients for tracking disease progression across a variety of medical conditions. We run into problems trying to develop questions and measures to accurately assess health versus illness.  Until we can define success and failure, I do not know how we could punish/fine/sue those who make an ineffective treatment.  This completely ignores the possible disincentive to create new treatments.

I saw this study a while back on cost effectiveness of DMTs in the United States (http://www.ncbi.nlm.nih.gov/pubmed/21775734), and the conclusion was DMTs in the U.S. are not cost effective by normal measures applied to our treatment of other chronic conditions. However, if we could get them marked down 2/3 to the cost level seen in the U.K. then the costs come in line with other chronic health condition treatments.  The temptation would be for all the patients who feel their drug is not working to seek repayment, and I can see and understand patients desire for “justice” in this as a way to bring the costs down.  However, we simply do not have the means to measure success, and attempts to punish “failures” could lead to worse outcomes for patients as a population.  .

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While I understand the frustration and annoyance with the pace of progress getting new treatments to patients, I think we patients need to be cautious in our use of our new market power.  While we have the ability to disseminate news and organize like never before, we need to be aware of the limits of our imperfect knowledge.  Perhaps the hardest part of this increase in patient power will be the self control to step back and look at progress from beyond just our personal benefit angle.  In research, a negative result is informative.  For an individual, a negative result can seem and even be, terrible.  To be successful, patient oriented research may require a selfless motivation foreign to most economic theory.

Indeed, “these are the days of miracle and wonder” when it comes to patient knowledge and power to effect change.  However, there may still be long distance charges to find and spread “truth.”

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patient centered healthcare, Patients Like Me, Patientslikeme.com, Uncategorized

Temporary Reprieve and Patient Centered Research

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I think one of the hardest parts of having a chronic condition is the almost inherent loneliness which comes along with all of the symptoms. When I think about my MS and my family’s understanding of it, I am forced to concede I would not wish them to understand. I think it is difficult for outsiders to understand not just the effect of the symptoms at any given point in time but also the fear and unpredictability of timing for likely outcomes. So I can not just wish my family to experience MS for an hour or a day because the worst part is the unknown.

It is with this feeling of isolation of experience that I went to the conference for patientlikeme.com this past week in Boston. It may take awhile for the trip’s success or failure to be seen in term of expanding the utility of the site by generating common language to tease out health information across medical conditions. What is known now is how much I and others across the spectrum seemed to enjoy meeting each other and the staff of patientslikeme.com.

After our last meeting, I was trying to phrase why it meant so much to me to meet these strangers previously known only from a web site. The closest I came was the realization of the honesty with which we all talked. There were no walls needed to spare the imaginations of those with whom we spoke. Everyone there had faced their own medical trial and moments of uncertainty. Watching the group dynamics was fascinating as we tried to capture in words and questions the ideas of “health, well-being and sickness.”

Very basic questions remained unanswered, such as for what purpose are we asking the questions.  Are we using the questions for diagnosis or tracking known problems.  Answering this basic question will be key for determining the wording of questions and ultimately the utility of the instrument designed.  I was surprised to hear such differences and commonality in unexpected places across the spectrum of our experiences when it came to defining such basic terms as “health.”  I can hardly wait to see where the patient centered research project goes from this hopeful first step.

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On a side note going back to last week’s appeal of Blue Cross Blue Shield’s rejection of covering Adderall for me, my neurologist wrote them (after their decision in my favor as it turned out).  In his letter to them he quoted three studies showing the positive impact of adderall for MS patients.  What I found especially heartening was the three studies show the same results as looking at Patientlikeme reported data.  It boosts credibility of a method when the same results are reached using an already approved methodology.   The use of patient oriented research could allow for much faster segmentation of study populations to better recognize where a treatment is likely to succeed or fail.  The better segmentation should drive down research costs over time and hopefully allow for a shorter time between discovery and market for new products.

If we can not have a cure, the next best thing is an improvement in how we search for cures.  It is my hope that patient centered research will allow for quicker, cheaper and possibly better studies of new treatments.  Maybe what we are seeing now is a first step in the right direction.  I’m not betting on getting it right the first time.  I’m betting on being able to learn ever more quickly from our missteps.

Which way to room 303? For all researchers, I hope our information is clearer than this sign.
Which way to room 303? For all researchers, I hope our information is clearer than this sign.
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