Pagliari, Claudia

English

This invited talk, given as part of the UK Farr Institute's "Frontiers in Health Informatics Research" series, aimed to introduce public health leaders from academia and government to emerging opportunities at the intersection of pharmaceutical research and digital health. Reflecting on industry trends, and delivered shortly after the launch of Apple’s ResearchKit, it highlighted the potential of innovations such as crowdsourced trial recruitment, mobile outcome measurement, and new generation wearables and ‘insidables’, to improve patient participation and generate real-time, ecologically valid data. The potential of the 'Digital Phenotype' to accelerate the pace of personalised and precision medicine was also examined, as well as some of the ethical challenges involved.<br/

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     Edinburgh Research Explorer                                      Patients, Prescribing & Personalised Pharmacy: Innovations andOpportunitiesCitation for published version:Pagliari, C 2015, Patients, Prescribing & Personalised Pharmacy: Innovations and Opportunities. inResearchGate. Farr Institute. Frontiers in Health Informatics Series, Edinburgh, United Kingdom, 30/06/15.https://doi.org/10.13140/RG.2.2.13196.51848Digital Object Identifier (DOI):10.13140/RG.2.2.13196.51848Link:Link to publication record in Edinburgh Research ExplorerPublished In:ResearchGateGeneral rightsCopyright for the publications made accessible via the Edinburgh Research Explorer is retained by the author(s)and / or other copyright owners and it is a condition of accessing these publications that users recognise andabide by the legal requirements associated with these rights.Take down policyThe University of Edinburgh has made every reasonable effort to ensure that Edinburgh Research Explorercontent complies with UK legislation. If you believe that the public display of this file breaches copyright pleasecontact openaccess@ed.ac.uk providing details, and we will remove access to the work immediately andinvestigate your claim.Download date: 22. Nov. 2020Patients, Prescribing & Personalised Pharmacy Innovations & Opportunities  Claudia Pagliari PhD FRCPE   Director, Global eHealth Programme Usher Institute for Population Health Sciences & Informatics Farr Scotland ADRC-Scotland  How might ePharma research impact the patient experience? •  Data linkage for scaled validation of clinical trial results   –  Real world intelligence for iterating guidelines & translational R&D •  Identifying signals of actual and potential ADEs  –  Early drug withdrawal or reformulation  –  Reduced patient discomfort & risk, better QoL  –  Understanding patient mediators for better stratified prescribing •  Demonstrating effects of Polypharmacy in natural experiments –  Interactions not yet causing harm –  Serendipidous associations •  Linking primary care prescribing data with clinical data   –  Informing personalised & stratified treatments •  Cost effective analytics  –  Cost-effective prescribing –  Value proposition for society •  ADRs -> 5-30% of hospital admissions in US, Australia, Europe  •  Tip of the iceberg, many go unreported  •  RCTs poor detectors. Small samples. Unrealistic controlled settings. Few opportunities to examine behavioral and patient modifiers. Not powered to detect micro effects. •  Scaled clinical data linkage holds great potential, and pharmacovigilance is the most advanced application of these methods so far  •  But this is only part of the story… •  Patient reported ADRs hold promise –  What are the best ways to do this?      Detecting Adverse Drug Reactions Mobiles & Clinical Trial Coordination Pharmaceutical industry investing in mobile platforms for trial coordination &  data management  Potential to speed translation to innovations for patient care  Companies springing up to fill this gap  Mostly data collection platforms, mobile form submission, updating protocols  Moving towards patient-reported outcomes …   •  75% of people unaware of clinical studies  •  Around half of all trials don’t fill their recruitment quotas   •  Not just scientists ‘pushing’ risky trials to patients •  Many patients want and seek engagement •  But risks of suggesting that ‘experimental’ is better Online awareness raising Direct-to-patient trial recruitment  “After six hours, we have 7,406 people enrolled in our Parkinson’s study. Largest one ever before was 1,700 people” (Tweet from Parkinsons app developer, May 2015)  Stanford Uni cardiovascular trial attracted 11,000 volunteers in one day after releasing their ‘MyHeart Counts’ App in the App Store. It would normally take a year to enroll that many subjects (Bloomberg Business, March 2015)  Early days. Sampling challenges (noise, representativeness), but great potential…. Clinical Trials & Data Quality Patient Recruitment Expense & inconvenience limit numbers & generalizability. Recruiting via apps could open up a population of potential trial participants. 700 million iPhone users    Data Objectivity Trial data can be subjective (e.g. symptom ratings) & clinical data can be flawed. ICT can generate quantifiable metrics e.g. exercise (actigraphy), biomonitoring (embedded sensors & linked peripherals), self-report tools etc.  May reduce false reporting by patients  Data Frequency 80% - 90% of iPhone users keep them within arm’s length 27/7. “We’re trying to change the scale of the data that we can collect, from data collected every three months, to every second.”    Apple Executive, quoted in Forbes Business, March 9th  Data quality – “Many Carbon Monoxide poisonings may have been intentional rather than accidental, raising questions for national reporting (Miller, Pagliari et al, IoM, 2011)  “Google X is building a wearable health sensor for cardiac and activity tracking, but it isn’t a Fitbit or Apple Watch competitor: Google’s device is a clinical-grade sensor designed for investigational use” MobiHealthNews, June 23rd The new wearables Linked to HealthKit, the Apple Watch can track blood glucose, heart rate, blood pressure, exercise and much more. Being portrayed as everything from a personal lifestyle checker to a cure for cancer. Coming soon Home-based telemonitoring is gaining traction but mHealth is the future Google-Novartis Diabetes Monitoring Contact Lens Patented Jan 2015.  Others following e.g. Medella Health The data captured as we interact with digital technologies and services, have potential to provide a phenotypic footprint, useful for research, diagnostics, prognostics and personalised medicine Multiple channels: •  Web searches •  Social media •  Mobile apps •  Wearables •  Smart homes  •  Internet of Things •  TV habits, Shopping etc. Digital Phenotype Jain et al May 2015. Nature Innovation Taylor, Pagliari, Osborne (2013). How Gestational Diabetes is Discussed on Twitter Using Society’s Data Trails New Responsibilites for Govt & Pharma? Looking to communities for innovative research May 9, 2015 “The first patient-driven campaign to find and fund critical research for high-risk multiple myeloma patients” http://mcri.myelomacrowd.org.  Ethics Davison, Pagliari, Cunningham-Burley et al (2012) •  Making the most of data from research repositories, clinical records and patients requires a new understanding of concepts like ‘science’, ‘personalised’, ‘ownership’ & ‘privacy’ •  Managing the tense intersection between academic & commercial research remains a barrier, and the dividing line is often blurred •  Our social & policy research is seeking to establish the boundaries of the social contract and inform the wider data science agenda for the UK and beyond Scot Gov Social Research, 2012     Patient Record Access & Trust   Enabling patients to access and question their data may help to build trust in research, identify errors, and support trial recruitment  Pharmacists asked us to identify controls, so I put the call out…I have 3000 patients with access to their records. When they know what they’re sharing they have more trust. It only took 6 hours to find the 80 or so patients that were needed!...“The key was that patients had been carefully consented. If people know what they’re signing up for and what the risks are, they won’t be as inclined to fear it later” (Amir Hannan) Pinciroli & Pagliari (2015) Building capacity www.eHealth.ed.ac.uk •  eHealth is multidisciplinary, multi-platform, cross-sectoral & global •  Rounded eHealth professionals are vital for future research, policy & practice  claudia.pagliari@ed.ac.uk Twitter: @EeHRN LinkedIn: https://uk.linkedin.com/pub/claudia-pagliari/6/32/a53 Researchgate: www.researchgate.net/profile/Claudia_Pagliari eHealth@ed.ac.uk  Thank you 

Patients, Prescribing &amp; Personalised Pharmacy: Innovations and Opportunities

https://www.pure.ed.ac.uk/ws/files/27898875/Claudia_Pagliari._Farr_Frontiers_in_Prescribing_Research_June_2015.pdf

Patients, Prescribing & Personalised Pharmacy: Innovations and Opportunities

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Patients, Prescribing &amp; Personalised Pharmacy: Innovations and Opportunities

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Patients, Prescribing & Personalised Pharmacy: Innovations and Opportunities