THE UNIVERSITY OF BRITISH COLUMBIA
THE UNIVERSITY OF BRITISH COLUMBIA
On July 2nd 2014, the Institute for Heart and Lung Health, University of British Columbia, held the inaugural Patient Advisory Committee (PAC) meeting in room 4223 of the Diamond Health Care Center located at 2775 Laurel Street, Vancouver, BC. The meeting was called to order at 12:30 pm by the moderator, Dr. Mohsen Sadatsafavi.
The meeting featured speaker presentations and a round table discussion involving patients and health care professionals having an interest in respiratory disease and improving the quality of life of individuals with chronic respiratory conditions.
Committee Members:
I. Beaucock; S. Chow; P. Greenwood; G. Greenan; S. Jenkins; L. Kirste; G. McKay; B. Vickers
Research Community Stakeholders
Kelly Ablog-Morrant, Director, Lung Health Initiatives, BC Lung Association; Jacob Andreou, Student, Queen’s University; Nick Bansback, Scientist, University of British Columbia; Mary De Vera, Scientist, University of British Columbia; Mark FitzGerald, Physician, University of British Columbia; Louise Gastonguay, Research Coordinator, University of British Columbia; Nelson Gorrin, PhD Student, University of British Columbia; Iraj Poureslami, Scientist, University of British Columbia; Roxanne Rousseau, Coordinator, University of British Columbia; Mohsen Sadatsafavi, Scientist, University of British Columbia; Arezoo Sotoodeh, Student, University of British Columbia; Nicole Tsao, PhD Student and Pharmacist
Regrets:
Linda Hui, Clinical Trials Coordinator;
G. McKay, Committee Member
Introduction and opening remarks by Dr. Moshen Sadatsafavi was followed by a light lunch. Dr. Mark FtizGerald spoke first on the importance of patient participation in respiratory research. Key points of the talk included why people should be in research and the benefits of participation. For example treatment education and proper use of medications were 2 areas of focus. Dr. Nick Bansback then presented information on a proposed web service to increase patient communication and education. Highlights of the talk included improving value of time spent with a physician. For example a patient using the tool could learn to identify questions for a physician during an appointment. Finally Dr. Iraj Poureslami spoke about broadening access to research and education across cultural and literacy boundaries. The topic invoked discussion on the importance of culturally diverse and relevant education material. For example the desire to allow family members to participate in physician appointments was recognized as a strong need for different cultures and for differing medical literacy levels.
Identified by the PAC and ordered by chronology:
1.Education
Strong interest in written material detailing further information of illness A public listing of studies (hosted at BC Heart and Lung?) for would be beneficial in the community for both enrolment and education
2.Patient Involvement
Strong patient desire for integration of research with usual care Peer relationships between patients and researchers, where patients are joining the study as a stakeholder, not only an input variable
3.Patient Communication
Greater opportunity to debrief with both researchers and caregivers Group discussions where topics are selected by patients would be very valuable to researchers and participants
4.Cultural Compatibility
An increased push to involve people from different cultures and languages would increase diversity in research and help produce a more comprehensive picture It is very important to engage family members of participants through a cultural support network (translators etc.)
Word cloud generated from verbs spoken during the Patient Advisory Committee 2014**
**Word Clouds utilized a NLP or Natural Language Processing. NLP is a tool that can be used to analyze verbatim text to dissect parts of speech, exposing sentence structure as well as meaning from the input. In the case of the Patient Advisory Committee, Jacob Andreou and Khalid Karim implemented Standford’s CoreNLP pipeline to deeply analyze the spoken content of the meeting. The transcript was analyzed for both keywords and raw verbs resulting in easily digestible insights. The output was then organized into “Word Clouds” representing word frequency through the duration of the Patient Advisory Committee discussions. For more information on the NLP pipeline used in this analysis, please visit nlp.standford.edu
