Dr Alan G Wade [email protected]. Patient Centricity The Key to Real World Data Dr Alan G Wade...

Dr Alan G Wade

[email protected]

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

[email protected]


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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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Patient Knowledge

Balanced Pharmacovigila

nce

Compliance

Understanding Pathways –

Disease, Investigation,

Treatment

HTA Assessment

Adaptive Licensing

Market Access

Using data from patients

www.patientsdirect.org


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Big Data

Research

(RCTs)

Physicians Database

entries

REGISTRIES

Laboratory Results

Other Miscellaneous

datasets

What data does pharma use?


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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


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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?


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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



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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“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

11Eye 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 :



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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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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


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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


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

Facebook

Friend

Newspaper

Link

Num

ber

of P

artic

ipan

ts

Age

20

Response• On-Line• Telephone


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Chronic Back Pain (IBP)


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IBP - source


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Spinal Cord Injury with Spasms – two part survey

Incomplete – awaiting prompt 2


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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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Dr Alan G Wade [email protected]. Patient Centricity The Key to Real World Data Dr Alan G Wade...

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