Into the Woods: First steps in a collaborative corpus of medical conversations

1. Into the Woods: First steps in a collaborative corpus of medical conversations Boyd H. Davis, PhD, Linguistics & Gerontology University of North Carolina at Charlotte Charlene A. Pope, PhD, MPH, Sociolinguistics MUSC College of Nursing Lillian Trettin, PhD, Archivist & Oral Historian MUSC Library

2. Objectives • To identify the journey of a team from 8 universities and 3 continents in developing the Carolinas Conversations Collection corpus • To propose strategies for interdisciplinary collaborations for corpus linguistics in the health sciences & as users of the Carolinas Conversations Collection

3. Why create a corpus of older people from diverse ethnic and language groups talking about health? • Most corpora do not include natural conversations with elderly people on health. • The ADEPT collection offers only provider-patient interactions & limited access • American communication studies under-represent those other than White and English-speaking

4. Systematic Collection • Cohort 1: 200 consented conversations with 72 older men and women of multiple ethnicities, with any of 12 chronic medical conditions • recorded twice a year, once with health professional graduate students, and once with community persons of concordant ethnicities and languages, in home or community settings. Common prompt questions. • Cohort 2: 200 naturally-occurring conversations with 72 persons with Alzheimer’s disease • longitudinal set • persons talk twice annually with gerontology and linguistics students.

5. Logic Model for Corpus Development Online, password-protected Internet portal able to retrieve time-stamped & aligned recordings and transcripts and conduct online analysis by gender, age, medical condition, ethnicity, and first language for speaker and/or interviewer

6. Recruitment

7. Informed Consent: Participants • Human subjects training for all staff • Inclusion and exclusion criteria • Restricted Data Use agreements • National Archive of Criminal Justice Data at University of Michigan safeguards for sensitive or anonymised data (http://www.icpsr.umich.edu/NACJD) • Special guardian consents & the cognitively impaired • Consent for interviewers

8. Informed Consent:Potential Risks + Protections • Audio recording, avatars • Careful explanation & freedom to stop • Responsibility to audit, offer removal & report • Loss of privacy & confidentiality • Embarrassment or agitation • Unanticipated disclosure

9. Protection for Archive/Corpus: Data Safety and Monitoring Plan • Annual review with library and IT staff of security issues and protocols • Annual review by Expert Panel members for potential ‘leakage’ of information in access and search strategies • Half-year review of linkages and server security systems by IT • Quarterly testing by PIs and library of procedures for password and protocol protection

10. Different Emphases for Consents: All institutions guard the rights of the participants: • Medical University Consistency • Medical protocol formats need consistency for quick location of information and potential interface with developing informatics • Veteran’s Health System (VHA) Security • Government-sponsored authorities must assure veterans of total data security and availability to families and personal respect • Research University Vulnerability • Research universities stay alert to participant vulnerability, potential abuse, and inadvertent disclosure by impaired speakers

11. “Think of it as a Tissue Bank…” • Translating the concept of a linguistic corpus for grant medical reviewers, IRBs, and institutional research review • Subject to inspections, sanctions, audits, fraud alerts (DHHS) • Contradictions: • Families & guardian rights • No defined benefit or beneficiary • Undefined use & nature of research • Unexpected consequences • Cognitively impaired & dual consent • Preserving respect

12. Monitoring & Training • User perceptions • User practices • User compliance with guidelines • Training to use Web portal • Training to search corpus • Training to use data • Portal function

13. Components Archive & transcriptions Meta-data Recording, editing, training Search & Storage Communication training for conversations with older persons

14. ONZEMiner • Links the database for transcripts to the lexical database CELEX and to PRAAT phonetics software, as well as to parsers. Fromont, R. and Hay, J. (2006). ONZEMiner. For ONZE (Origins of New Zealand English) Project, in the Linguistics Department of the University of Canterbury, Christchurch, New Zealand Retrieved from the Internet (8/30/06): http://www.ling.canterbury.ac.nz/jen/onzeminer/

15. Client-Server Schematic based on ONZEMiner Reference for Screen Shot: Fromont & Hays, 2006.

16. Example of identification Interface at the OnzeMINER data portal, to be adapted to fit the health care purposes of MUSC’s Carolinas Conversations Reference for Screen Shot: Fromont & Hays, 2006.

17. Annual Data Accrual & Categories

18. Gathering the Corpus • Under Construction: Journey continues

19. Acknowledgements • National Library of Medicine/NIH G08 Knowledge Management & Informatics Grant, 3 years, 2007-2010 • Our gratitude to Dr. Thomas Basler, Director of Library Services, MUSC, for the vision & corpus home, Ms. Mary Mauldin, MUSC Library CARC/IT for media assistance, and Dean Mark Sothmann and James Jones, MUSC College of Health Professions for server home