Yuri Quintana, PhD Harvard Medical School

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1 Spring 2015 Plenary II: Going Global

2 Building International Research Capacity and Global Data Collaborations Lessons Learned Yuri Quintana, PhD Harvard Medical School

3 Building International Research Capacity and Global Data Collaborations Lessons Learned Yuri Quintana, Ph.D. Clinical Harvard Medical School May 1, 2015

4 Global Health Challenges Rising chronic diseases Aging population Late or no diagnosis Lack of trained healthcare workers Lack of essential medicines Lack of appropriate equipment Poor or no integration of health IT systems Lack of reliable e data at local, regional & national a level e Poor coordination of healthcare delivery Rising costs of healthcare 4

5 Case Study: Central America 1980s: Few pediatric oncologists, - civil wars, earthquakes, floods and hurricanes - childhood cancer survival rates below 20% [1] 1990s: Specialized centers form - training via site visits and annual regional meeting - survival rates climb slowly to over 20% [2] : Cure4Kids.org launched to provide online education and collaboration tools - weekly online meetings to discuss best practices - survival rates climb to 48% [3] Sources: [1] AnnOncol Jan;4(1):37 40; [2] Lancet Dec 12;352(9144):1923 6; [3] Pediatric Blood Cancer May;61(5):

6 Community of Practice A community of practice (CoP) is a group of people from a common profession or interest area that share knowledge and experiences with each other so that they can grow personally and professionally. 6

7 Communities of Practice Local Group Regional Societies National Professional Societies International Professional Societies Challenge: Limited Frequency of meetings, cost of travel, limited depth of collaborations 7

8 Communities of Practice People with Common Needs Collective Intelligence Join a List Create New Knowledge Share Best Practices Create a Discussion Forum 8

9 Learning and Collaboration Platform Source: Quintana Y, O Brien R, Patel A, Becksfort J, Shuler A, Nambayan A, Ogdon D, Chantada G, Howard SC, Ribeiro RC. Cure4Kids: Research challenges in the design of a website for global education and collaboration. Information Design Journal 2008; 16:3,

10 Learning and Collaboration Platform Online Learning Platform Online Collaboration Platform -Online Seminars -Online web meeting services -Self Paced Courses -Group shared documents -Instructor Led Courses -Online teachingclasses classes -Care Guidelines -Online clinical case discussions for -Competency based curriculums second opinion on care treatments linked to online educational resources -Online meeting minutes notes -Clinical Case Library -Recorded meetings archive -Shared collaborative projects tools Source: Quintana Y, O Brien R, Patel A, Becksfort J, Shuler A, Nambayan A, Ogdon D, Chantada G, Howard SC, Ribeiro RC. Cure4Kids: Research challenges in the design of a website for global education and collaboration. Information Design Journal 2008; 16:3,

11 Online Live Group Clinical Discussions 400 groups formed worldwide for live online group meetings Over 200 groups remain active Source: Guimera D, Hernandez H, Huertas M, De Colsa A, Robles VP, Johnson K, Quintana Y, Caniza MA. Combined web based distance learning followed by brief on site practice: a cost effective way of training infection preventionists in countries with limited resources. Am J Infect Control 39:E152 E153, Santiago TC, Jenkins JJ, Pedrosa F, Billups C, Quintana Y, Ribeiro RC,Qaddoumi I. Improving the histopathologic diagnosis of pediatric malignancies in a low resource setting by combining focused training and telepathology strategies. Pediatric Blood Cancer Feb 7. AlFaar A, Kamal S, Abouelnaga S, Greene W, Quintana Y, Ribeiro R, Qaddoumi I. International Telepharmacy Education: Another Venue to Improve Cancer Care in the Developing World. Telemedicine and e Health Jul Aug;18(6):

12 Case Study: Central America Online meetings for º Continuing education º Second opinion on case management º Program administration development Key Success Factors º Regular meeting time º Multi-disciplinary team participation º Involvement and mentoring of new staff 12

13 Oncopedia - Asynchronous Clinical Forum Source: May D, Quintana Y, Chantada G, Ribeiro R. Developing Oncopedia: Creating and Editing an Online Collaborative Educational Resource for a Global Audience, Science Editor, Council of Science Editor, May June 2009, Vol 32, No 3, pp

14 Global Data Sharing Virtual Sites Shared Library El Salvador Protocols Honduras Forms Guatemala Reports Nicaragua Charts Costa Rica Documents Panama Source: Quintana Y, Patel AN, Naidu PE, Howard SC, Antillon FA, Ribeiro RC. POND4Kids: A Web based Pediatric Cancer Database for Hospital based Cancer Registration and Clinical Collaboration. Studies in Health Technology and Informatics. 2011;164:

15 Global Data Sharing Source: Quintana Y, Patel AN, Naidu PE, Howard SC, Antillon FA, Ribeiro RC. POND4Kids: A Web based Pediatric Cancer Database for Hospital based Cancer Registration and Clinical Collaboration. Studies in Health Technology and Informatics. 2011;164:

16 Case Study: Central America Connect AHOPCA pediatric oncology society annual meeting Access to continuing Education on Cure4Kids.org Access experts via Web meetings on Cure4Kids.org Collaborate Develop common protocols on Cure4Kids.org Disseminate new knowledge via weekly meetings on Cure4Kids Trust Data sharing for quality improvement on POND4Kids.org Second opinion consultation 16

17 Case Study: Central America Focus on sharing not Credit Developed common protocols adapted to local resources Common needs Weekly meetings to discuss clinical cases Clear goals Access to continuing education on Cure4kids.org Shared data and outcomes on POND4Kids.org Peer to Peer Collaborations Expanded from 1 to over 30 communities in entire region Clinical Protocols Nursing Palliative Care Laboratory Medicine Data Management Clinical Improvement Source: Richardson, S., Banks, M.S., Kettinger, W., and Quintana, Y. (In Press) IT and Agility in the Social Enterprise: A Case Study of St. Jude Children s Research Hospital s s Cure4Kids IT Platform for International Outreach. Journal of the Association of Information Systems. 2014:15(1) 15(1). 17

18 Central America Outcomes Increased survival rates from 20% to over 50% for common types of cancer in some low income clinics i Expanded Communities of Practice to other disciplines Expanded Multi-Disciplinary Teamwork Multiplier effect impact beyond ped-onc unit Quality Improvement Initiatives - Late Referrals (community outreach) -Toxic deaths (adapting protocols) Sources: Quintana Y, Patel AN, Arreola M, Antillon FG, Ribeiro RC, Howard SC. POND4Kids: A Global Web based Database for Pediatric Hematology and Oncology Outcome Evaluation and Collaboration. Stud Health Technol Inform. 2013;183: Ayoub L, Fu L, Pena A, Sierra JM, Dominguez PC, Pui CH, Quintana Y, Rodriguez A, Barr RD, Ribeiro RC, Metzger ML, Wilimas JA, Howard SC. Implementation of a data management program in a pediatric cancer unit in a low income country. Pediatric Blood Cancer Jul 21. Barr RD etl al. Asociación de Hemato Oncología Pediátrica de Centro América (AHOPCA): a model for sustainable development in pediatric oncology. Pediatr Blood Cancer Feb;61(2):

19 Evolution of Communities Connect People Connecting with Common Needs Access to Continuing Education Access Best Practice Guidelines Collaborate Peer to Peer Support Develop New Best Practices and Guidelines Disseminate new knowledge Trust Mentoring Networks (Senior Junior member) 2 nd Opinion Networks (advice giving in real time) Data Sharing for Quality Improvement Source: Richardson, S., Banks, M.S., Kettinger, W., and Quintana, Y. (In Press) IT and Agility in the Social Enterprise: A Case Study of St. Jude Children s Research Hospital s s Cure4Kids IT Platform for International Outreach. Journal of the Association of Information Systems. 2014:15(1) 15(1). 19

20 Facilitators Supportive Community Transparent and Inclusive Leadership Open to Innovation Critical Mass of People Common Needs Clear Goals Focus on Sharing not Credit Common Tools and Language Supportive and Responsive Community Renewal of Leadership Evolving and Relevant Goals Creation Ceato of New Communities Source: Richardson, S., Banks, M.S., Kettinger, W., and Quintana, Y. (In Press) IT and Agility in the Social Enterprise: A Case Study of St. Jude Children s Research Hospital s s Cure4Kids IT Platform for International Outreach. Journal of the Association of Information Systems. 2014:15(1) 15(1). 20

21 Barriers Misaligned Goals and Needs Inflexible and Non Transparent Leadership Dominating Personalities Focused on Credit Hidden Agendas Lack of Access to Knowledge Institutional Rigidity Infrequent Meetings Non Responsive Community Non Returning Membership Irrelevant Mission and Goals Source: Richardson, S., Banks, M.S., Kettinger, W., and Quintana, Y. (In Press) IT and Agility in the Social Enterprise: A Case Study of St. Jude Children s Research Hospital s s Cure4Kids IT Platform for International Outreach. Journal of the Association of Information Systems. 2014:15(1) 15(1). 21

22 Connected Information Systems Community Outreach Early Diagnosis Patient Referrals Community Health Indicators Clinical Care Optimizing Clinical Care Creating Peer Networks Patients and Families Patient Reported Data Family Care Networks 22

23 Technical Challenges Trying to collect too much data Tools Import of legacy data Tools and processes for data quality assurance Conversion of international units Managing g diverse medical vocabularies & taxonomies Granularity of data access controls Offline tools that can synchronize Inconsistent bandwidth 23

24 People Challenges Availability of technical staff (security) Lack of training in local languages Retention of staff Sustainable funding Inconsistent communications Cultural differences Semantic differences ( urgent, minor, abandonment ) Lack of Governance models for data sharing Lack of Trust 24

25 Lessons Learned Need achievable plan give local resources Agreed on objectives, target outcomes, timelines Design programs to meet regional needs Long term commitment Training and career ladders are key Incentives, rewards, recognition Locally appropriate change management approach Easy to use platforms that can scale to larger size 25

26 Yuri Quintana, Ph.D. Director, Beth Israel Deaconess Medical Center Harvard Medical School d d

27 Spring 2015 Plenary II: Going Global

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