Focus Group, Adverse Drug Event Research Program

Participate in focus groups and workshops  to help the Adverse Drug Event Research Program improve medical care by developing, evaluating and implementing health systems interventions for patients who are at risk of and/or suffering from adverse drug events.

Open to: Volunteers in the Vancouver area, specifically Vancouver General Hospital patients.

Lead Organization or Department

Adverse Drug Event (ADE) Research Program – A multi-organization initiative

Aim

75% of Canadians over 65 are taking one or more prescription medication daily to treat chronic conditions like hypertension, heart disease, or mental illness. Unfortunately, this trend has come with a price: adverse drug events (ADEs), the unintended and harmful events associated with medications, have become a leading cause of preventable adverse events in medicine. They are also a leading cause of emergency department visits and unplanned hospital admissions. Tragically, the occurrence of an ADE could make a medication—intended to prevent or treat disease—harmful and sometimes even deadly. The ADE Research Program focuses on improving medical care by developing, evaluating and implementing health systems interventions for patients who are at risk of and/or suffering from ADEs. This includes interventions to help identify ADEs in clinical care and to improve health data on ADEs so researchers and drug regulators can develop system-level preventative strategies. Our work includes identifying opportunities for prevention (e.g., examining the rate and categories of preventable ADEs). We also seek to develop health systems interventions to improve clinical care and patient outcomes (e.g., developing clinical decision-making tools, developing an ADE reporting platform). Action ADE is currently one of our main research projects. Research has found that 30-50% of patients who have suffered from an ADE will be unintentionally re-exposed to the culprit drug—the drug that previously caused a harmful event. This happens because information about ADEs is not reliably shared between hospitals, doctors’ offices and pharmacies. Action ADE is an electronic ADE reporting interface that we are developing and would like to evaluate. We anticipate that healthcare providers will use it to capture and share information about ADEs between providers (e.g., doctors, pharmacists and nurses) and across healthcare sectors (e.g., between hospitals, doctors’ offices and pharmacies). We seek to engage patients to help us improve faulty systems, and identify, develop, evaluate and prioritize new areas for medication safety interventions. We also hope that patients can help us refine and build upon areas that we have already identified for interventions. By inviting patients to be active partners in our research, we aim to help patients and caregivers become more involved in health care, and increase their capacity to set priorities and influence health system change at a regional and provincial level.

Level of Engagement

This opportunity is at the level of consult on the spectrum of engagement (www.iap2.org). The promise to you is that the health care partner will listen to and acknowledge your ideas and concerns, and provide feedback on how your input affected the decision.

Eligibility

• We are seeking participants in our research for focus groups and workshops. These individuals are patients and/or caregivers (>19 years) who are excellent communicators and critical thinkers, and have lived experience in the health system in one or more of the following ways:

-Diagnosed with one or more chronic medical conditions that require(d) exposure to multiple prescription drugs (known as polypharmacy), or providing/provided care to someone exposed to polypharmacy; OR -Experiencing or experienced adverse events related to medications, or looking/looked after someone who experienced adverse events related to medications; OR -Have lived experience with one or more sensitive medical conditions (e.g., HIV/AIDS) that prompt reflection or particular concern about the privacy of medication and health information

• These patients will provide views on data privacy and the sharing of adverse drug event and medication information.
• Patients should have previously attended a PVN orientation session.  If you have not attended an orientation but are interested please contact the Engagement Leader directly to see if accommodations may be possible.

Logistics

• Approximately 50 people from diverse patient groups (e.g., older adults, vulnerable patients, etc.).
• We will ask patients to participate in a one-time, in-person focus group, lasting 90 to 120 minutes per session.
• Currently scheduled session is: Tuesday, December 6th, from 4:30 pm to 6:30 pm. Volunteers attend one focus group. If this scheduled session does not fit with your schedule, we are still interested to hear from you and potentially hold future sessions for you to attend.
• Any scheduled session will be held at Vancouver General Hospital

Reimbursement

We will reimburse participation by providing a meal and vouchers for a grocery store, and/or reimbursement for time in accordance with our Ethics approvals. We will also reimburse parking.

Background

This opportunity has come about because we are seeking to expand and refine a research program on an evolving public health crisis - the increasing number of patients suffering harm from medications. We believe that engaging patients in our research program will help us identify, develop, evaluate and prioritize new areas for medication safety interventions, and help us refine, build upon, and prioritize already identified areas for interventions. We also seek patient input specifically into an adverse drug event reporting platform we are developing, and that we hope to implement in British Columbia. We seek to explore, with patients and caregivers, to what extent and how patients would like to participate in ADE reporting, how, and through what type of portal. We are a multi-disciplinary research team that includes the following members: • Dr. Hohl is the principal investigator of the ADE Research Program. She is a clinician scientist who practices emergency medicine, and a health services researcher focusing on ADEs. Dr. Hohl leads research projects that provide epidemiological data to guide further development of health systems interventions to prevent ADEs, and evaluate the implementation of medication management interventions. She is co-principal investigator of the Action ADE project. • Dr. Balka is a communications professor specializing in health information technology and participatory action research. She has been working with the ADE Research Program since 2012, and works with multi-disciplinary teams to improve the design and use of information technology in health care settings. She is nominated principal investigator of the Action ADE project. • Hospital-based and community pharmacists • Graduate students in Epidemiology, Communications, and Knowledge Translation. • Research Assistants and Coordinators We engage with a diverse group of stakeholders: • Patients; • Physicians; • Community pharmacists; • Government officials (BC and ON Ministries of Health, federal MP); • Healthcare managers and administrators; and, • Professional bodies (BC College of Pharmacists, College of Physicians of BC). The potential risks of participating in focus groups are possible loss of confidentiality of information provided voluntarily. We will make every effort to minimize this risk, and patients are not obligated to answer any questions if they are not comfortable doing so. All participants will be asked to treat the information exchanged during the focus groups in confidence. No identifying information or records will be released without consent, unless required by law. All participants will be asked to consent to protecting the confidentiality of others. Focus group and workshop discussions that are audio-recorded will then be transcribed. Once transcribed, the audio versions will be deleted. The identities of individuals will not be recorded on the transcribed field notes. Therefore, it will not be possible to track individual identities based on field notes once they are completed and audio recordings are deleted. The information we intend to share with patients will include all of our publications and presentations delivered that they have been involved with. Patients will receive updates and outcomes if new information is available, or at the end of the study they participated in. We will disseminate materials via our website or email.

Health Care Partner Contact Information

Selena Davis
Engagement Leader, Patient and Public Engagement | Kootenays & Boundary
250.505.7866
sdavis@bcpsqc.ca