Transcript Patient centred outcomes research and Clinical research in

Patient centred outcomes research
and
Clinical research in Individual patients*
Introduction to a blended offline-online course
BOOC
Rakesh Biswas,
Professor Medicine,
LNMC,Bhopal,
Deputy Editor,
BMJ Case Reports, UK
Patient Centred Outcomes Research: An emerging
area since 2010 sourced from :http://www.nejm.org/doi/full/10.1056/NEJMp1207437
PCOR Definition
Defining Patient-Centered Outcomes Research
(PCOR)
Helps people and their caregivers communicate and make informed health care
decisions, allowing their voices to be heard in assessing the value of health
care options. This research answers patient-centered questions such as:
Expectations
“Given my
personal
characteristics,
conditions and
preferences,
what should I
expect will
happen to me?”
3
Options
“What are my
options and what
are the potential
benefits and
harms of those
options?”
Outcomes
“What can I do
to improve the
outcomes that
are most
important to
me?”
Decisions
“How can
clinicians and the
care delivery
systems help me
make the best
decisions about
my health and
healthcare?”
National Priorities for Research and Research Agenda
Assessment of Options for Prevention, Diagnosis, and Treatment
• Comparisons of alternative clinical options to support personalized decision-making and self-care
• Identifying patient differences in response to therapy
• Studies of patient preferences for various outcomes
 Improving Healthcare Systems
.
 Communication & Dissemination Research
.
 Addressing Disparities
.
 Accelerating PCOR and Methodological Research
.
• Improving support of patient self-management
• Focusing on coordination of care for complex conditions and improving access to care
• Comparing alternative strategies for workforce deployment
• Understanding and enhancing shared decision-making
• Alternative strategies for dissemination of evidence
• Exploring opportunities to improve patient health literacy
• Understanding differences in effectiveness across groups
• Understanding differences in preferences across groups
• Reducing disparities through use of findings from PCOR
•
•
•
•
Improving study designs and analytic methods of PCOR
Building and improving clinical data networks
Methods for training researchers, patients to participate in PCOR
Establishing methodology for the study of rare diseases
4
“This is going to be
research done
differently!”
PCORI Board Member Harlan Krumholz, MD
National Patient and Stakeholder Dialogue
National Press Club, Washington, DC
February 27,2012
Research Classification and where does all
this fit in?
Qualitative Research
Quantitative Research
• Naturalistic study designs • Empirical or interventional
study design
• Case Study CS research
method
• Randomized Controlled trials
RCTs
MIXED METHODS?
Limitations of RCT Clinical trial data
Clinical trials
Clinical practice
Number of Patients
Hundreds(rarely thousands)
Thousands to millions
Duration
Weeks
Years
Population
Pregnant , children and elderly All
excluded
Concomitant medication and
illness
Avoided
Usually present
Dose
Fixed
Variable
Conditions
Rigorous
More information
Flexible:
Less information
Two different research paradigms?
Population based
Patient centred
• Very structured
• Explanatory
• Highly transferable,
explicitly
• Does not retain context.
• Generalizable i e Easily
applicable to generic
problems
• Less structured
• Exploratory and explanatory
• Transferable in both implicit
and explicit form.
• Retains context.
• Individualizable: i e Well
applicable to specific
problem instances
BMC Medical Informatics and Decision Making 2004, 4:19
http://www.biomedcentral.com/1472-6947/4/19
A Different Methodology
for Patient Centred
Research?
Introduction to an IMRAD abstract for
Patient centred Research
Introductory Assumptions:
• Every patient is a separate research project
and deserves special attention.
• It begins with a patient encounter but may
not necessarily end solely with that patient.
• It can fit into an IMRAD structure in spite of
these assumptions. 
IMRAD Abstract template for Patient
centred Research?
• Introduction: For all our projects our broad research questions
are: What ails this patient and how can we help find better options?
• Method: An informational intervention can help answer the above
questions? A platform that thrives on online-offline multidisciplinary
inputs?
• Results: Answers to what ails and what options does the patient
have and what new innovations were developed through
multidisciplinary inputs.
• Discussion: How does it fit in with what other researchers have
found in similar patients? What are the perspectives for future
research (especially testing new innovations )?
Our patient centred research intervention:
Utilizing Multidisciplinary inputs to the
Patient Centred Online Health Record
PCOHR to drive patient care
Mining Patient Data from PCOHRs
• We don’t need to set up a clinical trial
• We don’t need to enrol a single research
subject
Source: http://www.nytimes.com/2013/01/15/health/mining-electronic-records-for-revealing-healthdata.html?pagewanted=all&_r=0
Data mining : tools and techniques
Descriptive models
Predictive models
Identifies similar patterns
Identifies current impact from
past data
Uses:
Uses:
Classification,
Classification,
Association rules
Regression
and
and
Visualization.
Time series analysis
Sourced from https://fedcsis.org/proceedings/2011/pliks/142.pdf
Data mining : The Case Based Reasoning
technique
• The data of current case experiences are
compared to similar solutions that were
successful in past cases
• Past solutions are the starting point for solving
the new case
• Useful for including co-occurrence of multiple
diseases, time series features and overlapping
diagnostic categories
Sourced from https://fedcsis.org/proceedings/2011/pliks/142.pdf
The Case Based Reasoning cycle
Sourced from: http://www.idi.ntnu.no/~agnar/publications/esrel98.pdf
Data mining using Case Based Reasoning: A
Case Study
Patient Centred Research: An Illustration
Another patient with enlarging hands and
Feet uploaded to our PCOHR intervention
Patient Centred Inter Institutional
Collaboration
What is the diagnosis and what are his
best options toward cure?
Potential workflow for LN Medical College
Patient centred case study research:
Potential workflow for LN Medical College
Patient centred case study research:
Results? Did we answer the most
important research question for this
patient?
• What ails this patient and how can I help find
better options?
Who else in interested in Patient centred
research?
Who else in interested in Patient centred
research?
Patient Centred Inter Institutional
Collaboration
Patient Centred Inter Institutional
Collaboration
Patient Centred Inter Institutional
Collaboration
Join us
• BMJ Case Reports Medical
Elective:http://promotions.bmj.com/jnl/bmj-case-reports-student-electives/
• Phd program in Health Informatics in
collaboration with Monash University,
Malaysia:https://sites.google.com/site/niknailah/Home/call-for-phdcandidate-scholarship
More here
• July 2014, French student experience:
http://userdrivenhealthcare.blogspot.in/2014/09/positiverole-of-medical-electives-in.html
• Feb 2015, US and Indian student experience:
http://userdrivenhealthcare.blogspot.in/2015/02/medicalelective-learning-points-from.html
• October 2013 Bhopal student
feedback:http://likethechickenscratch.blogspot.in/?m=1,
• July 2014 CMC Vellore presentation on Bhopal Medical
Elective:https://www.youtube.com/watch?v=Xm2LpqAmqjo