Dr Alan G Wade [email protected]. Patient Centricity The Key to Real World Data Dr Alan G Wade...
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Transcript of Dr Alan G Wade [email protected]. Patient Centricity The Key to Real World Data Dr Alan G Wade...
Dr Alan G Wade
Eye for Pharma Washington DC 14-15 Oct 2014
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Patient Centricity
The Key to Real World Data
Dr Alan G Wade
Eye for Pharma Washington DC 14-15 Oct 2014
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Real World Data
• Real World Data comes directly from patients/carers/family members
• Appropriate because– No filtering by HCPs– More open answers– Can be anonymous -no embarrassment factor– No fear of conflict or confrontation with HCP– Time to reflect and provide a full account of disease or condition
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Eye for Pharma Washington DC 14-15 Oct 2014
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Patient Knowledge
Balanced Pharmacovigila
nce
Compliance
Understanding Pathways –
Disease, Investigation,
Treatment
HTA Assessment
Adaptive Licensing
Market Access
Using data from patients
www.patientsdirect.org
Eye for Pharma Washington DC 14-15 Oct 2014
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Big Data
Research
(RCTs)
Physicians Database
entries
REGISTRIES
Laboratory Results
Other Miscellaneous
datasets
What data does pharma use?
Eye for Pharma Washington DC 14-15 Oct 2014
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Existing registries
Strengths• Large numbers• Immediate access• Longitudinal data(retrospective)
• Prescribing data
Weaknesses• Inherent biases• Representative population• Diagnostic drift • Patient level data• Surrogate outcomes• Completeness of data• Family social and work history• Patient attitudes
To effectively use any registry it is important to understand how and why it has been developed and its strengths and weaknesses
Claims Databases e - Medical Records
Eye for Pharma Washington DC 14-15 Oct 2014
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What the Patient Knows
What the Patient Shares
What the physician understands
What the Physician records
Big Data
What data is in a registry?
Ask the patient – but how?
Eye for Pharma Washington DC 14-15 Oct 2014
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Collecting patients and data
Identify data required
Develop On-line and telephone
collection
Recruit patient
population Develop questionnaire
Collect one-off or longitudinal data
Collate and analyse data
Produce report/publication
Develop protocol
www.patientsdirect.org
Eye for Pharma Washington DC 14-15 Oct 2014
Brief – “Define Impact on Family of a Child Contracting a
Flu Like Illness”
Methodology• Baseline Survey
– 946 Families– 3695 Individuals
• Follow Up every two weeks– 540 “flu like illnesses”
Influenza Survey 2012/13
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Eye for Pharma Washington DC 14-15 Oct 2014
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“ILI” Influenza Like Illness
Outcomes• In 22% of child ILI an adult had to take time off
work (50% for ≥2 days)
• 30% of adult ILIs were linked to child ILIs (of those adults who had to take time off work 70% were off for > 2 days)
• Quantified NHS Use
Poster prepared for at ISPOR 2014 prior to full publication
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• Bespoke – ask required questions• Prospective• Hosted on independent site• Interactive• Multi-national coverage
Structured patient registries
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Eye for Pharma Washington DC 14-15 Oct 2014
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Retrospective Structured prospective
Presence of YOUR required data + +++
Representative population ++ ++
Large numbers +++ ++
Linkage of data fields of interest ? +++
Confirmation of diagnosis ++ ++
Standardised measurement + +++
Validated outcomes + ++
Patient level data + +++
Social,economic and attitudinal data - +++
Response to unexpected findings + +++
Immediacy of data +++ ++
Longitudinal data +++ +++
Cost ++ ++
Registries
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Daily Mail, Tuesday, March 4, 2014Eye for Pharma Washington DC
14-15 Oct 2014
• Outlet for their feelings and views – might be a threat to their relationship if they report problems to their healthcare professional – we’re neutral
• Altruistic - Assist in developing new and better treatments
• Obtain better information and knowledge through participation• Feel valued through regular contact/ interaction• Desire to make sure the patients voice is heard
Why do people participate?
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...the benefits and attraction to each individual will differ but we believe the main reasons are :
Eye for Pharma Washington DC 14-15 Oct 2014
Eye for Pharma Washington DC 14-15 Oct 2014
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Is Patient Data Reliable?
• No ulterior motive• Answer what they feel and know• Why would they be untruthful?
– No or very minimal incentive –usually to charity
• Accurate? – Depends partially on the skill of the questions
• Diagnosis– 85% of prospective diagnosis is from clinical history
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Eye for Pharma Washington DC 14-15 Oct 2014
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Individualised to project
Media/advertising– Electronic advertising - Google, Facebook, Twitter– Traditional advertising –newspapers– Editorials/ Feature articles– Patient Groups, websites– TV, radio
Physicians/databases – point of delivery e.g. vaccines
Consider– Target population– Demographics– Disease– Cost efficiency
Recruitment – The Key
www.patientsdirect.org
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Considerations– Age?– Education?– Social class?– Carer reporting?
• Alz Dis• children
On-line or alternative reporting?
If inappropriate – provide alternative reporting methodology – live telephone interview
Eye for Pharma Washington DC 14-15 Oct 2014
Population Recruitment Targeting – Chronic back pain in younger sufferers
Targeting younger sufferers
Under 20
21-30 31-40 41-50 51-60 61-70 71-80 81-900
20
40
60
80
100
120
140
160
180
200
Friend
Newspaper
Link
Num
ber
of P
artic
ipan
ts
Age
20
Response• On-Line• Telephone
Eye for Pharma Washington DC 14-15 Oct 2014
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Chronic Back Pain (IBP)
Eye for Pharma Washington DC 14-15 Oct 2014
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IBP - source
Eye for Pharma Washington DC 14-15 Oct 2014
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Spinal Cord Injury with Spasms – two part survey
Incomplete – awaiting prompt 2
Eye for Pharma Washington DC 14-15 Oct 2014
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Summary
Patients are a repository of large quantities
of data that is:– Relevant to the Real World– Not Recorded– And Valuable
It is important we collect and evaluate this data and utilise it as a valuable source of RWD
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