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

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?”

“What are my options and what are the potential benefits and harms of those options?”

“What can I do to improve the outcomes that are most important to me?”

“How can clinicians and the care delivery systems help me make the best decisions about my health and healthcare?”

Options Outcomes Decisions

Defining Patient-Centered Outcomes Research (PCOR)

3

PCOR Definition

National Priorities for Research and Research Agenda

4

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.

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PCORI Board Member Harlan Krumholz, MD National Patient and Stakeholder Dialogue National Press Club, Washington, DCFebruary 27,2012

“This is going to be research done differently!”

“This is going to be research done differently!”

Research Classification and where does all this fit in?

Qualitative Research

• Naturalistic study designs

• Case Study CS research method

MIXED

Quantitative Research

• Empirical or interventional study design

• Randomized Controlled trials RCTs

METHODS?

Limitations of RCT Clinical trial dataClinical trials Clinical practice

Number of Patients Hundreds(rarely thousands) Thousands to millions

Duration Weeks Years

Population Pregnant , children and elderly excluded

All

Concomitant medication and illness

Avoided Usually present

Dose Fixed Variable

Conditions RigorousMore information

Flexible:Less information

Two different research paradigms?

Population based• Very structured• Explanatory• Highly transferable,

explicitly• Does not retain context.• Generalizable i e Easily

applicable to generic problems

Patient centred• 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

• 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-health-data.html?pagewanted=all&_r=0

Mining Patient Data from PCOHRs

Data mining : tools and techniques

Descriptive modelsIdentifies similar patterns

Uses:

Classification,

Association rules

and

Visualization.

Predictive models

Identifies current impact from past data

Uses:

Classification,

Regression

and

Time series analysis

Sourced from https://fedcsis.org/proceedings/2011/pliks/142.pdf

• 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

Data mining : The Case Based Reasoning technique

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-phd-candidate-scholarship

More here• July 2014, French student experience:

http://userdrivenhealthcare.blogspot.in/2014/09/positive-role-of-medical-electives-in.html

• Feb 2015, US and Indian student experience: http://userdrivenhealthcare.blogspot.in/2015/02/medical-elective-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