Oct. 31, 2017

AbSPORU: Helping researchers get data faster

Since the Alberta SPOR SUPPORT Unit’s Data Platform was established it’s sped up access to data for researchers. In 2015, the wait time for data was reduced from three months to five weeks and recently, the platform achieved an average of three-four days for the majority of data requests. “Working closely with Alberta Health Services to get access to data, hiring more data analysts, and becoming more familiar with the type of research requests have all contributed to the improvement in data access,” says Jeff Bakal, PhD, Associate Director of the Data Platform. AbSPORU has access to 51 databases (up from 37 a year ago) which includes physician claims (which captures all the diagnoses and procedures at doctors’ offices), the National Ambulatory Care Reporting System (which captures all the dates, diagnoses and procedures that take place in the ER and during hospital clinics and day surgeries) and the Laboratory Services Database (which captures the lab tests). “Demand for data has been steadily increasing,” says Bakal. “We’re also finding that more researchers have projects that have a patient-oriented focus.” The Data Platform has statistical, methodological and database expertise. They regularly work with researchers to design a research plan, manage data, develop and execute biostatistical plan to answer the research question and generate training opportunities. Learn more about the Data Platform and apply for services.

Evidence shows importance of patients involvement in health research

There is a growing body of evidence that is in support of more active engagement of patients in health research. For Laura Saunders, a parent who was a member of the Electronic Medical Records “Letter Study” research team, it was exciting and confusing when she was first approached to provide a parent voice in the study looking at parents’ perceptions about receiving a copy of their child’s respiratory specialist’s outpatient letters. Typically specialist letters are only shared between a doctor and specialist. Laura’s perspective quickly changed when she experienced the respect and interest in her comments, from research team members and she noted that “being part of the study makes my voice louder and knowing my voice is heard can make a difference and is empowering.” Laura’s experiences are the focus of a recent paper, Patient and Researcher Engagement in Health Research: A Parent’s Perspective published in Pediatrics by the American Academy of Pediatrics in September 2017, and co-authored by Israel Amirav, AbSPORU Patient Engagement Lead Dr. Vandall-Walker, Jananee Rasiah, and Laura Saunders. Dr. Vandall-Walker notes that when patients and researchers engage on projects, outcomes are usually mutually beneficial. “The EMR Letter Study is a good example of the value patients bring to a research project. Through the involvement of two other parents like Laura, a proposed survey was revamped to be more meaningful to parent respondents and plans for recruitment to the study were clarified,” says Vandall-Walker.

Learn more about the levels of patient and researcher engagement through this schematic and find out how the Patient Engagement Platform can help you.

Laura Saunders, parent member, Electronic Medical Records Letter Study

Save the Date: Summer Institute 2018

Summer may be a long way off but planning is underway for the Alberta SPOR SUPPORT Unit Summer Institute which is taking place May 14-16 at the Best Western Plus Village Park Inn in Calgary. “We plan on building on the success of past Summer Institutes and intend to reach out to broader audiences including people who haven’t attended before,” said Dr. Diane Aubin of the Career Development Platform. “One of the things we heard through our evaluation of last year’s Summer Institute was that we need to have more diversity in our audience including broader populations from Alberta and from different sectors”, says Aubin. Last year’s Summer Institute attracted 300 participants and included welcome greetings from Deron Bilious, Alberta’s Minister of Economic Development and Trade and a keynote address from Simon Denegri, the Chair of INVOLVE and the National Institute for Health Research (NIHR) National Director for Public Participation and Engagement in Research in the UK. A hallmark of Summer Institute 2018 will continue to be the opportunity for networking. “The Summer Institute is about bringing people together and facilitating dialogue which leads to building capacity in patient-oriented research,” says Aubin. Learn about the Summer Institute.

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