Tuesday, 22 November 2016

#ClinicSpeak: what does personalised medicine mean to you?

Personalised or precise, when it comes to medicine does it make a difference? #ClinicSpeak #MSBlog 

It's that time of year again; time for  the European Charcot Foundation meeting in Baveno. The programme is below. I am scheduled to speak on 'Personalized Medicine' on Friday. I have never done a talk on this topic so it is down to the drawing boards; I need a set of new slides and some inspiration. The following is Wikipedia's definition

'Personalized medicine is a medical procedure that separates patients into different groups—with medical decisions, practices, interventions and/or products being tailored to the individual patient based on their predicted response or risk of disease.'

I think it will be important to differentiate personalised medicine from precision medicine

'Precision medicine (PM) is a medical model that proposes the customization of healthcare, with medical decisions, practices, and/or products being tailored to the individual patient.'

It would help me if  you could give me some kind of steer or guidance from you. What does personalised medicine mean to you? Is the care you receive personalised? Am I missing the point is it about how your team engages with you, or is it about your treatment or management? Is the NHS's drive to care pathways and personalised care plans compatible with your understanding of personalised medicine? Should personalised medicine be delivered by a computer algorithms or humans? Is humanised medicine more important? Help! Thanks. 





Program

The theme of this year’s Annual Meeting: Multiple Sclerosis' Treatment in Practice promises interesting debates amongst researchers and clinical practitioners. 
The XXIV ECF Lecture will be given by Prof. Dr. Gilles Edan, Head of the Neuroscience Department Pontchaillou Hospital, Central University Hospital of Rennes, France.
The Scientific Committee of the 24th Annual Meeting: G. Comi (president), M. Clanet, G. Edan, F. Fazekas, H.P. Hartung, L. Kappos, H. Lassmann, J. Palace 

Thursday November 24, 2016

10:15 – 10:45
Welcome Coffee
 
10:45 – 11:45
Satellite Symposium EXCEMED - Excellence in Medical Education
 
11:45 – 12:45
Industry-sponsored Symposium

12:45 – 13:15
Light Lunch

13:15 - 14:15
XXIV ECF Lecture 

DMD Treatment Approval for MS: 20 Years Later!
14:15 - 16:00
Session I: TARGETS FOR INTERVENTIONS




B Cells Dependent Immune Mechanism as a Target for Intervention
Pathophysiology of MS Variants: Treatment Implications
H. Lassmann
Cytokines: Still a Relevant Target for MS Treatment?
R. Hohlfeld
The Blood-Brain Barrier in MS: a Target for Treatment?
E. de Vries
Q&A and Discussion
 
16:00 - 16:30
Coffee Break and Live Stream Poster Presentations 

16:30 - 18:00
Session II: LESSONS FROM CLINICAL TRIALS

Methodology Problems: Old and New Solutions
P. S. Soerensen
What do we Learn from Treatment Failures
How to Compare Efficacy Profiles of Treatments (Meta-Analysis)
M.P. Sormani
Q&A and Discussion
 
18:00 – 18:15
Coffee Break

18:15 – 19:15
Industry-sponsored Symposium
 
19:15 – 20:15
Welcome Cocktail 


Friday November 25, 2016

07:15 - 07:30
Light Breakfast and Coffee
 
07:30 - 08:30
Industry-sponsored Symposium
 
08:30 - 10:15
Session III: POST MARKETING STUDIES




Methodological Aspects and Evidences
M. Trojano
10 Year Prospective Observation UK Study
Safety and Tolerability
M. Clanet
Adherence in MS
T. Ziemssen
Q&A and Discussion
 
10:15 – 11:15
Coffee Break and Poster Viewing

11:15 - 13:00
Session IV: IMPROVING ASSESSMENTS
Chair: L. Patrucco




Cognition and Fatigue
IK. Penner
Wearable Devices for Remote Control
Patients Reported Outcomes
Q&A and Discussion

13:00 - 14:00
Lunch

14:00 - 15:45
Session V: TREATMENT INDIVIDUALIZATION




Personalized MedicineG. Giovannoni
MS Prognostic Aspects
Role of Omics
M. Comabella López
Role of the Organization
G. Comi
Q&A and Discussion
 
15:45 - 16:15
Coffee Break

16:15 - 18:00
Session VI: MONITOR AND TREATMENT




Assessment of Treatment Response
MRI Monitoring
C. Enzinger
Neurophysiology Methods
Safety Monitoring
H. Wiendl
Q&A and Discussion

18:00 – 18:15
Coffee Break

18:15 – 19:15
Industry-sponsored Symposium




Saturday November 26, 2016

08:30 - 10:15
Session VII: TREATMENT DECISIONS
Chair: D. Miller




Breaking Through Disease
Starting a Treatment
Stopping a Treatment
Sharing Decisions with Patients
Q&A and Discussion

10:15 - 10:45
Coffee Break

10:45 - 12:00
Session VIII: MS TREATMENT IN WOMEN AND CHILDREN




Effects of Treatment on Reproduction
Treatment Decisions before and during Pregnancy
MS Treatment during Puerperium and Lactation
Pediatric MS
Q&A and Discussion

12:00 - 12:30
Young Investigator Awards

12:30 - 13:00
Concluding Remarks
13:00 - 14:00
Lunch


12 comments:

  1. I don't understand, really. Is this about patients' lifestyle and/or personality? Would you make an assessment of likely adherence to treatment? And does that mean you'd look at educational level? Presumably, yes, in conjunction with all the medical evidence. I'm reminded of my (neuro)physio, who told me that on her first meeting with a patient she could tell within thirty minutes if s/he would adhere to a regime and cope generally with a long-term condition. And isn't this assessment what neuros are doing in their heads during consultations? So perhaps the only real change would be that this would be formalised via a patient questionnaire and a face-to-face discussion of the results. Perhaps this would up the game for consultants with less good personal skills, but IMO a good neuro is already doing all this.

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  2. "Personalised medicine" starts with listening to your patient. And I mean really listening.

    A wise old doctor once told me that the most useful and important advice he received as a medical student was "listen to your patient, they are telling you what's wrong".

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    Replies
    1. Is active listening a skill taught in medical school? lol

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  3. Personalised treatment, its about you the medical expert understanding me the patient. I am not a number or just another MS sufferer. My treatment requirements are different from the next patient that you see. I need to be able to engage with the person who is treating me and I expect them to understand what I want/need.

    It also includes delivery of the treatment and to manage me and my disease. make sure that my expectations for the treatment are correct It will be different for each patient and each expert will react differently.

    I see it as the medical man treating me as a human being with total fairness and honesty, no discrimination, no elitism.

    I hope that helps

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  4. For me, longer consultations, with supportive Dr's free from COI, would be good. As things are, it is unfair on doctors and their patients.

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  5. Personalized medicine is about knowing which medications are going to work for which patient; in theory, on the basis of individual genomics data. This is as opposed to "trial-and-error" approach (let's try interferons, or ho, they don't work for this person, let's try tecfidera - oh no, no luck again..." LONG way to go!

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  6. Holistic: Stating the obvious: everyone's MS is as individual as they are. No treatment happens in isolation of an individual's life. Taking account therefore of the broader context and not solely the medical remit.
    Partnership: expect the pwMS to be pro-active, or facilitate this as far as possible in all that wider context.
    Personally speaking it is empowering and uplifting to self-help as much as is possible and I would like to think this is true/ can be true for many others.
    Sadly however, I have to agree that demands appear to be such that the consultations are infrequent, with a medical agenda, and the capacity to know patients as people an impossibility.

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  7. Biomarkers, genetic info and better understanding of MS aetiology are needed if we are going to get even close to 'right patient, right treatment, right time' or personalised medicine as we see in oncology or cardiology

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  8. Shortly before she was to start chemo for cancer, my partner's oncologists told her that they believe (though they cannot conclusively prove) that her particular cancer is estrogen based and that she could benefit more from the (then) new experimental estorgen suppression (or induced menopause) treatment than the then standard chemo treatment available to her.

    That felt like personalised medicine.

    In the context of MS, I can see a feeling of 'personalised medicine' being evoked when you are able to tell which individual person will benefit from which treatment, or who will get symptom relief from ampyra or what an individual's long term outlook may be :)

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  9. To me personalized medicine is much less personal, it is data driven, biomarkers, genetics and a very targeted medication with definite outcomes. I don't need to feel listened to, I want to get in and out.

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    Replies
    1. If your medication wasn't working and you were feeling worse, would you then want to be listened to?

      Clearly, in your world of personalised medicine, you wouldn't be getting worse (and I so do want to live in your world of personalised medicine) - but we still live in this imperfect world ;)

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  10. I certainly thought that personalised medicine is quite different from holistic care or patient-centred medicine (much as I would want that) and like others think it is all about genomics. It is clear in cancer, with different treatments for melanoma depending on BRAF status and for breast cancer depending on HER status. Is there anyway of tailoring MS treatment and management according to genetic profile? Is it in the pipeline?

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