Big Questions About Big Data

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Wednesday, May 29, 2019
Matrix Hotel, Edmonton, AB

Until fairly recently, the only ‘big data’ applications we saw were from established data linkage groups which had solid policies and procedures for ensuring ethical conduct. Increasingly, we are seeing a range of new developments – researchers working outside those large groups who want to link their own small research or clinical data with public population datasets and private sector clinical research organisations (CROs), pharmaceutical companies and device manufacturers who want to link their own data with other public and private population datasets. Outside of the health sector, educational and social care organisations are also discovering that data linkage can facilitate rigorous evaluations of their own programs.

Join Prof Annette Braunack-Mayer for an engaging talk on the social and ethical issues related to the collection and use of real world data to inform private and public health and social care decisions. Prof Braunack-Mayer will describe some of her current projects about these issues and the challenges they perceive for the future and the policy environment around data linkage.


Prof Annette Braunack-Mayer profile pictureProf Annette Braunack-Mayer, Head of School, School of Health and Society, Faculty of Social Sciences, University of Wollongong

Prof Braunack-Mayer is a bioethicist and public health researcher. Her research combines ethical analysis with a wide range of qualitative methods for engaging with citizens, patients, consumers and stakeholders. She has particular expertise in the use of deliberative methods of engagement with communities, but her research skill set extends across qualitative research and includes the incorporation of insights from quantitative research. She has led community engagement activities with citizens, patients and stakeholders across 10 funded projects, combining methods including citizens’ juries, in-depth interviews, focus groups, participant and non-participant observation, document and media analysis. Her current research spans vaccination policy and programs, the appropriate use of big data, obesity prevention, and chronic disease prevention in Aboriginal and Torres Strait Islander communities.

Event Details

Date: Wednesday, May 29, 2019
Time: 12:00 p.m. – 1:30 p.m. MT
Venue: Amber Room, Matrix Hotel
Location: 10640 – 100 Ave NW, Edmonton (Map link)

Please note: A light lunch will be served at this event.


Registration is required as seating is limited. To register, please click the following link:

Real World Evidence in Alberta NOAHE Event

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Presented by Alberta RWE and NOAHE. Dr. Scott Klarenbach will be speaking about the importance of Real World Evidence (RWE), how the province of Alberta has advantages with respect to utilizing Real World Evidence to facilitate cutting edge research and development, and how the Alberta RWE Consortium will help the province become a global leader in Real World Evidence generation.


Dr. Scott Klarenbach is a nephrologist and Professor in the Department of Medicine at the University of Alberta. He holds the Kidney Health Research Chair, and is the Chair of the Alberta Expert Committee on Drug Evaluation and Therapeutics, Chair of the Canadian Society of Nephrology Clinical Practice Guideline Committee, President of the Canadian Organ Replacement Registry Board, and serves on the Canadian Task Force on Preventative Health Care. He received his medical training at the University of Alberta, and completed his MSc in Health Economics at the University of York, United Kingdom. His research interests include health outcomes and health economics research; he has conducted numerous economic evaluations and health technology assessments for both chronic and acute conditions.

Event Details

Date: Thursday, January 17, 2019
Time: 12:00 pm – 1:00 pm MT
Location: Room 20D, ATB Place, 10020 – 100 St, Edmonton (Map link)

Please click the following link for more information about this event:

RWE Workshop Summary Report

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This report provides a summary of a real-world evidence (RWE) design sprint workshop that took place on October 21, 2018 in Toronto, Ontario. The workshop was developed and delivered as a joint partnership between the Canadian Agency for Drugs and Technologies in Health (CADTH); Canadian Association for Population Therapeutics (CAPT), Health Canada, and the Institute of Health Economics (IHE). The intent of the workshop was to identify key opportunities for RWE to support decision-making throughout the pharmaceutical product life cycle, as well as the evidence standards required to be considered decision-grade.

DIA Real World Evidence Conference

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Within the past few years there has been a lot of discussion on the generation and utilization of real world evidence (RWE). It is well-known that regulators use RWE to monitor post-market safety and to make regulatory decisions, Sponsors utilize it to support both clinical trial design and observational studies to generate treatment approaches, and healthcare systems collect and use RWE to substantiate coverage decisions. However, what are the ‘new and innovative’ RWE applications in today’s healthcare ecosystem? This conference will explore examples of unique applications of RWE, and describe novel ways stakeholders are leveraging RWE to advance healthcare knowledge and decision-making.

Please click the following link for more information:

Alberta Data Asset Directory

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The Alberta RWE Consortium is pleased to make available an Alberta Health Data Asset Directory.  This resource has been prepared by the Consortium to provide interested organizations with an overview of the major data assets within the province. The identified assets are organized into three (3) different categories.

  1. Clinical (e.g. laboratory investigations, dispensed pharmaceuticals, immunizations)
  2. Populations & Health Resource Utilization (e.g. provincial client registry, hospital admissions, physician visits)
  3. Oncology (i.e., administrative and clinical data specific to oncology)

This Directory will be updated regularly as new assets become available or accessible. Some of the assets in this Directory have more limited access and documentation than others. For all potential RWE projects, research teams working under the leadership of the Consortium will conduct a feasibility assessment to confirm data availability and accessibility for specific requirements.

National Academies of Sciences, Engineering, and Medicine RWE Workshops

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On September 19–20, 2017, the National Academies of Sciences, Engineering, and Medicine held the first workshop of a three-part series titled Examining the Impact of Real-World Evidence on Medical Product Development. The workshops are intended to advance discussions and common knowledge among key stakeholders about complex issues relating to the generation and use of real-world evidence (RWE). The first workshop focused on how to align incentives to support the collection and use of RWE in health product review, payment, and delivery and how to address the barriers that impede the uptake and application of RWE. This publication briefly summarizes the presentations and discussions from the workshop.

On March 6–7, 2018, the National Academies of Sciences, Engineering, and Medicine held the second workshop of a three-part series titled Examining the Impact of Real-World Evidence on Medical Product Development. The workshops are intended to advance discussions and common knowledge among key stakeholders about complex issues relating to the generation and use of real-world evidence (RWE). The second workshop focused on practical approaches for the collection of real-world data (RWD)—data generated outside of the traditional clinical trial setting—and the use of RWE. This publication summarizes the presentations and discussions from this second workshop.

Alberta RWE Consortium Co-Chair Change

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The Secretariat of the Alberta RWE Consortium is pleased to announce that Dr. Scott Klarenbach (University of Alberta) and Dr. Fiona Clement (University of Calgary) will serve as co-Chairs representing their institutions. Dr. Christopher McCabe (Institute of Health Economics) will continue to serve as a co-Chair.  We thank Dr. Lawrence Richer (University of Alberta) and Dr. Marcello Tonelli (University of Calgary) for their strong contribution and leadership to help establish the Consortium.

International Population Data Linkage Network (IPDLN) Conference 2018

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The 2018 IPDLN Conference will be held at the Banff Centre, located in Banff National Park in Alberta, Canada. The conference will take place September 12-14, with a pre-conference day September 11. The theme is:  Linking Data – Improving Lives.  This event will create a forum for the presentation and discussion of research and innovation in the area of Linked Population Data Science and Policy Impact. The overall themes build on previous work done by IPDLN as well as relevant emerging health data linkage areas such as such as data and linkage quality, data linkage methodology, pan-jurisdictional and cross-sectoral data linkage, emerging data types, privacy, regulation and governance, data analytics, and data linkage for policy development.  More information can be found here.

Alberta health organizations and universities team up to optimize analysis of real world data to inform decision-making

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The Institute of Health Economics, the University of Alberta, and the University of Calgary are pleased to announce the creation of the Alberta Real World Evidence C onsortium – . The mandate of the Consortium is to support the development of quality real world evidence generation and utilization.

Real World Evidence (RWE) studies investigate the impact of an intervention or technology on health outcomes and resource utilization in clinical conditions outside of the controlled clinical trial setting. The evidence is generated from routinely collected health data to evaluate the safety, effectiveness, and value of newly introduced or existing health technologies and/or other interventions.

Alberta has one of the largest, most mature, detailed and comprehensive health system data depositories in Canada. As such, Alberta is poised to become a global leader in RWE generation. To realize this potential, the Universities of Alberta and Calgary, along with the Institute of Health Economics, have led the formation of the Alberta RWE Consortium. Consortium membership also includes Alberta Innovates, Alberta Health, Alberta Economic Development and Trade, and Alberta Health Services.

Alberta is a leader in health innovation. With Canada’s largest integrated health delivery system and this new consortium, we are set to take a leadership role in RWE research. The University of Alberta is excited to gain new insights to streamline and improve health care through real world data,” said Dr. Lawrence Richer, Associate Dean, Clinical & Translational Research, University of Alberta.

Through the Alberta RWE Consortium, industry and other health system partners have access to coordinated resources, expertise, processes, and data that ensures high-quality RWE studies.

Key functions of the Consortium include:

  1. Optimization of Alberta’s RWE studies
  2. Strengthening the Alberta RWE ecosystem
  3. Providing world class project support services, including study design, execution, and knowledge sharing
  4. Identifying and supporting projects that align with provincial health and policy priorities, ensuring relevance to decision-makers in Alberta
  5. Convening the best pan-provincial teams for commissioned, large-scale projects that may also have implementation components

The RWE consortium will help foster cutting-edge health research with industry and other health sector partners interested in real world data applications in Alberta,” said Dr. Marcello Tonelli, Associate Vice President, Research, University of Calgary, “This will guide health care investment, making policy more effective and impactful.

RWE is playing a growing role in technology adoption, as well as health policy and clinical practice decision-making, recognizing some of the limitations of traditional controlled clinical trials. Governments and health service providers are using RWE to improve health outcomes in priority areas, and to monitor the post-market safety and effectiveness of new or existing health technologies and innovations. This information is also being used to support coverage and procurement decisions, as well as to assess return-on-investment of public dollars. Additionally, clinicians are increasingly using this information in the development of clinical guidelines and decision-support tools, and, with quality RWE, technology developers may improve market access over time.

As a trusted convener, the Institute of Health Economics has a long-standing history of fostering collaborative partnerships. As Secretariat to the RWE consortium, the IHE will support the optimization of quality RWE research in Alberta,” said Dr. Christopher McCabe, Executive Director and CEO, Institute of Health Economics.

Albertans place a high value on their right to privacy and confidentiality. The province protects and controls health system data through a rigorous data-protection regulatory framework. Those working on Consortium-led projects (e.g., data custodians and researchers) are legally obligated to be in strict compliance with provincial and federal privacy legislation, as well as established organizational privacy and security policies. For more information about the Consortium, its suite of services, and its privacy and security measures, please visit

Jasmine Brown
Director of Communications, Institute of Health Economics
Office: (780) 401-1768 | Cell: (780) 966-4879 | Email: [email protected]

Shelby Soke Communications Associate
Faculty of Medicine & Dentistry, University of Alberta Office: (780) 492-0647 | Email: [email protected]

Jenny McLean
Communications and Marketing Specialist
Office of the Vice-President, University of Calgary
Office: (403) 210-3992 | Email: [email protected]

ISPOR Educational Webinar: Leveraging Data Science and Innovative Digital Technologies to Optimize Real World Evidence Generation

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ISPOR will be offering a new, complimentary educational webinar on June 12th, Leveraging Data Science and Innovative Digital Technologies to Optimize Real World Evidence Generation. The webinar is open to all – ISPOR members and non-members – so please join us and forward to colleagues who could benefit.

Real world evidence is playing an increasingly important role in HEOR and healthcare decision-making. However, the diverse nature and sheer volume of real world data presents a number of challenges to healthcare and life sciences organizations aspiring to leverage real world evidence to, respectively, improve patient clinical outcomes, and demonstrate the safety and value of pharmaceutical products.

Whether it’s structured, multi-structured, or unstructured, today’s real world data presents a barrier to insight because it is derived from a wide-variety of sources – including electronic health records, genomics data, sensors, wearable devices, etc. – and stored across disconnected silos that make it difficult to integrate and transform this disparate information for analysis and insights. In this webinar, we’ll discuss how data science and digital data technologies are empowering organizations to overcome these obstacles while transforming the way real world evidence is generated and used.

Presented by:

Jyotsna Mehta, Founder, KEVA Health, (Knowledge Evidence Value Access)
Bill Fox, Chief Strategist, Global Healthcare, Life Sciences and Insurance, MarkLogic
Dr. Javier Jimenez, Vice President & Global Head RWE and Clinical Outcomes, Sanofi
Dr. Ashish Atreja, Chief Innovation Officer, Medicine, Mount Sinai Health System
Sponsored by MarkLogic

Event Details:

Tuesday, June 12, 2018 10:00 am
Easter Daylight Time (New York, GMT-4:00)

Participation is open to everyone – members and non-members of ISPOR. Reservations are on a first-come, first-served basis. Only the first 500 participants to login to the webinar will be able to see it.

Webinar Link: