EAIN-3986 Patients Engagement to Reduce Zika Disease and Improve Maternal Child Health Blueprint for Research

Transcription

1 EAIN-3986 Patients Engagement to Reduce Zika Disease and Improve Maternal Child Health Blueprint for Research Colloquium: Ethical Aspects for Patients Involvement in Research The Case for Establishing a Patient-Centered Research Agenda for Zika and Emerging Health Threats APPENDIXES I. Colloquium Agenda II. Colloquium Bio book III. Participant Commitment Sheet IV. List of Attendees V. Evaluation Tool

2 I. Colloquium Agenda

3 9:00 AM Zika Research Agenda Update 9:30 AM Plenary Session: Why Involve Patients in Research? Why Ask Them What Matters? TRACK A TRACK B About PCOR New Methodologies: Have I Really Got Rid of my Old Research Habits? How Does IRB Apply to Patient Centered Outcome Research? Tools for Measuring Patient Engagement and Partnership For Patients Services Available for Babies Born with ZVD Know the Laws, Know your Childs' Rights: A Patient's Perspective Early Stimulation and Interventions at Home 11:15 AM 12:50 PM 1:45 PM 2:30 PM 3:15 PM 4:30 PM Panel: Ethics of Responsibility: Subject of Zika and Pregnant Women Carrying Out Patients and Stakeholders Engagement Panel: Success Stories I - Community Outreach Panel: Success Stories II - Research Efforts Plenary Session: Communications During Public Health Emergencies Wrap Up & Evaluation Networking FOLLOW US:

4 II. Colloquium Bio book

5 Colloquium: ETHICAL ASPECTS FOR THE PARTICIPATION OF PATIENTS IN RESEARCH Establishing a patient-centered research agenda for Zika and emerging diseases August 31, 2018 Hotel Verdanza Carolina, Puerto Rico

6 HOST PRINCIPAL INVESTIGATORS Sra. María Fernanda Levis Peralta Dr. María de Rosario González LEADERSHIP TEAM Dr. Enid J. García Dr. Lourdes E. Soto De Lourido Dr. Carmen Zorrilla Dr. José Cordero Dr. Cynthia García Coll Dr. Inés García Ms. Natacha Suárez Carlo MAIN SPEAKERS Ms. Lisa Orloff Dr. Frances García 2 BLUEPRINT FOR THE FUTURE

7 WHAT IS THE PURPOSE OF THIS COLLOQUIUM? The purpose of this colloquium is to disseminate the results of the work carried out around the development of a Zika research agenda for Puerto Rico and to share the results of available research, while at the same time it is offered to researchers, patient clinicians and members of the community, the opportunity to collaborate under the research model of Patient-Centered Outcomes. OBJETIVES: Emphasize redirecting and training participants in patient-centered outcome research as a model of responsible and ethical research. Disseminate the results of the research work that has been carried out in Puerto Rico related to Zika. Share about services for pregnant women and babies with Zika or exposure to Zika in Puerto Rico. WHAT IS PATIENT-CENTERED OUTCOMES RESEARCH? WHY IS IT SO IMPORTANT? Patient-centered research is aimed at answering research questions about how to achieve the results that are most important to the patient and their caregivers. The research process includes patients, caregivers, clinicians, health service insurers (medical plans), scientists and representatives of health systems, among others. The patient is a peer in the research process and

8 actively participates in deciding what is to be studied and how the study will be carried out. This way of doing research has the purpose that the results of the process are of quality, useful and pertinent so that interested groups can make decisions based on relevant information. We want to determine which of the alternatives available for health care work best for the patients and their caregivers. This way of working is based on the belief that the patient and the public in general have the right to have good information that is useful to choose between options or alternatives related to the management of their disease. This benefits the patient, their family and the community, helps improve the quality of the research by focusing on important research questions for the patient and producing results that can be used in the clinical practice. RESEARCH AGENDA TO REDUCE ZIKA AND IMPROVE MOTHER-CHILD HEALTH: SUMMARY The Agenda is aimed at patients, researchers, sectors interested in health, the government, and non-governmental organizations inside and outside of Puerto Rico. It is the result of a unique initiative that is intended to contribute to the body of knowledge about Zika from the perspective of the people most affected by this virus. The purpose of this project is to outline the most important research questions for patients and sectors interested in healthliving with Zika and contribute to inform ways to prevent and address situations that, like Zika, threaten public health. This agenda summarizes the topics discussed in the Canvas for the Future conference. held in San Juan, Puerto Rico on March 23 and 24, 2017, and which brought together patients, researchers, clinicians, scientists, community leaders, among others, to identify the needs for action and research not addressed in this area.

9 The agenda for Zika research in Puerto Rico is defined by the following priorities (without order of importance): 1. Systems / strategies to disseminate vital information to the public and to health service providers about public health emergencies. 2. Education and guidance to patients, communities and providers to promote specific actions aimed at preventing Zika and health care for pregnant women and their progeny. 3. Integration between disease surveillance and the information directed to providers, coordination between institutions / agencies and articulation among available community resources. 4. Lack of empathy and stigmatization of the pregnant woman diagnosed with Zika. 5. Participation of groups and citizens in multisectoral work.

10 Colloquium Agenda: Ethical Aspects for Patients Involvement in Research The Case for Establishing a Patient Centered Research Agenda for A Zika and Emerging Health Threats August 31, 2018 Verdanza Hotel Carolina, Puerto Rico 8:00 AM Breakfast and Registration 8:30 AM Call to Order 8:40 AM Welcome and Overview of the Agenda Mariela Rodríguez 9:00 AM Zika Research Agenda Update María Levis 9:30 AM (30 min.) Plenary Session: Why Involve Patients in Research? Why Ask them What Matters? Frances García

11 10:00 AM Break Track A for Researchers and Stakeholders Moderator: Natacha Suárez Track B Parents and families Moderator: María del Rosario González 10:10 AM Track A: New Methodologies: Have I really got Rid of my Old Research Habits? Carmen Zorrilla & Enid García Track B: Services Available for Babies Born with ZVD Inés García 10:30 AM Track A: How does IRB apply to Patient Centered Outcome Research? Vanessa Sepúlveda Track B: Know the Laws, Know your Child s Rights? A Patient s Perspective Marta Gonzál 10:50 AM Track A: Tools for Measuring Patients Engagement and Partnership María Levis Track B: early Stimulation and Interventions at Home Elizabeth Pagán

12 11:15 AM Panel: Ethics Responsibility on the subject of Zika and Pregnant Women Moderator: Lourdes Soto Waleska Sanabria Vicent Sifres Marieli Rivera 12:00 M LUNCH 12:50 PM Carrying Out Patients and Stakeholders Engagement Small Groups Working Session Rosario González 1:45 PM Panel: Success Stories I Community Outreach Outreach Coordinators from: Migrant Health Center Corporación Sanos Centro de Servicios Primarios de Salud de Patillas Moderator: Ivette Segui, ASPPR 2:15 PM Break 2:30 PM Panel: Success Stories II Research Efforts Inés García Carmen Zorrilla Luzceida Vargas Carmen Vélez Vega Moderator: Ignacio Álvarez

13 3:15 PM (50 min.) Plenary Session: Communications during Public Health Emergencies Lisa Orloff 4:05 PM Wrap up and Evaluation Rosario González 4:30 PM Networking BLUEPRINT FOR THE FUTURE 9

14 PRINCIPAL INVESTIGATORS MARÍA LEVIS PERALTA MPH, MPA, PCMH-CCE Impactivo, LLC MARÍA DEL ROSARIO GONZÁLEZ, MD, FAAP Alianza de Partos Prematuros de Puerto Rico

15 10 BLUEPRINT FOR THE FUTURE KEY AREA LEADERS DR. ENID J. GARCÍA EHSRC Clinical Research and Community Health Office, UPR Medical Sciences Campus School of Medicine Community Participation DR. LOURDES E. SOTO DE LAURIDO IIPESAG, HiREC UPR Medical Sciences Campus Zika Sexual Transmission

16 BLUEPRINT FOR THE FUTURE 11 DR CARMEN ZORRILLA UPR Medical Sciences Campus School of Medicine Pregnant Women DR. INÉS GARCÍA UPR Medical Sciences Campus School of Medicine Infants and Children

17 12 BLUEPRINT FOR THE FUTURE DR. CYNTHIA GARCÍA COLL Carlos Albizu University, San Juan, Puerto Rico Infant and Children DR. JOSÉ CORDERO University of Georgia Vectors Control NATACHA SUÁREZ CARLO Patients BLUEPRINT FOR THE FUTURE 13

18 PRINCIPAL SPEAKERS DR. FRANCES GARCIA Universidad Central del Caribe School of Medicine Doctor Frances García is the Designated Institutional Officer for Graduate Medical Education at her institution since 2002 being director of Graduate Medical Education, Continuing Medical Education, the Center for Biomedical Humanities and Bioethics and preside the Institutional Review Board at UCC. She teaches Ethics, Pediatrics and First Year Genetics. Dr. García is a graduate of Medicine form the UPR School of Medicine and has a specialty in Pediatrics, Subspecialty in Neonatology and training in Bioethics. She belongs to organizations such as Tri Beta, Alpha Omega Alpha Medical Honor Society, and the American Academy of Pediatrics. She also belongs to the Commission of the Interuniversity Alliance for the Ethics of Communal Living and the Bioethics Federation of Puerto Rico. She is a Fellow of the American Board of Pediatrics LISA ORLOFF Executive Director of World Cares. Ms. Lisa Orloff is a non-for-profit entrepreneur and president of Resiliency Advisors, LLC. She founded World Cares Center, after her experience on September 11, 2001 where she observed how everyone wanted to volunteer to help but needed basic skills to be effective. Throughout her professional career she has developed several methods to face the challenges associated with the response to natural disasters and social emergent disasters, and how to equip community leaders with the skills and knowledge needed to become leaders in times of crisis.

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20 We help you make sense of health care data to design initiatives that improve your patient s health and your organization s financial returns OUR SERVICES

21 WE THANK THE SUPPORT AND COLLABORATION OF THE FOLLOWING INSTITUTIONS: Colloquium funded by the Patient-Centered Outcomes Research Institute (PCORI) Eugene Washington PCORI Engagement Award (EAIN-3986).

22 III. Participant Commitment Sheet

23 Give patients a voice In Research My commitment... I believe that patients should participate as members of the research teams in order to give relevance to these projects and to see they respond to patients' needs. I promise to: Share with my doctor possible research questions Talk to a researcher about the importance of patient engagement Organize a group of patients to generate research questions Share educational materials about this research model Insist that the patient voice is heard as part of the research efforts Other: I am... PATIENT RESEARCHER STAKEHOLDER detail: OPTIONAL: Name:

24 IV. List of Attendees

25 1. Adelise Mattei Vélez 2. Alerianne Rivera 3. Angélica M. Burgos 4. Beverly Ortiz 5. Bianca Aulet 6. Carmen D. López 7. Carmen Vélez Vega 8. Carmen Zorrilla 9. Carol Salas 10. Chrismary Balbuena 11. Claudia Colón 12. Coralis Serrano 13. Cyd Rosa 14. Daisy M. Gely 15. Darwin Ramos 16. Dayling Díaz 17. Digna Torres 18. Edgar Segarra 19. Ednita Arroyo 20. Edras Rodríguez 21. Elizabeth Crespo 22. Elizabeth Pagán 23. Enid García 24. Estefanía Diez 25. Frances García 26. Frances González 27. Franchely Soto 28. Freddie Hernandez 29. Giselle Cabán Rosa 30. Glorimar Martínez 31. Héctor Ortíz Arroyo 32. Idiarelys Ortiz 33. Idith R. Ortíz 34. Ignacio Álvarez 35. Inés García 36. Irán Martínez 37. Ivana Ugarte 38. Ivette Fuentes 39. Ivette Seguí 40. Jackeline Calderón 41. Jaime Rodriguez 42. Jennifer Medina 43. José Colón 44. Joseline Ocasio 45. Josué Pinto 46. Juanita Negron 47. Julia Roig 48. Katherine Castillo 49. Keyla Román 50. Laraika González 51. Leticia Gely 52. Leyshla Hernández 53. Lisa Orloff 54. Liz Nieves 55. Lourdes E. Soto 56. Lourdes Garcia 57. Luis R. Ocasio 58. Luz Quercado 59. Luzeida Vargas 60. Madeline Ortíz 61. Maria Cecilia Rodriguez 62. María del R. González 63. María Ivette Rojas 64. María Levis 65. María Morales 66. Mariel Sierra Rosa 67. Mariela Rodriguez 68. Marieli Rivera 69. Marta González 70. Melanie Santana 71. Melissa Rodríguez 72. Natacha Suarez 73. Nestor Bracero 74. Pablo J. Quiñones 75. Pamela De La Cruz 76. Paola N. Torres 77. Pedro Hernández 78. Raisa Ugarte 79. Ramón Cordero 80. Raymond Santiago 81. Rebecca Rodríguez 82. Rosa Sierra 83. Roxanna Rivera 84. Sandra Claudio 85. Soami Santiago 86. Staycha Cachola 87. Stephanie Martínez 88. Tamara Rivera 89. Thalia Rosario 90. Vanessa Sepúlveda 91. Vincent Sifres 92. Waleska Sanabria 93. Willmarie Morales 94. Yaritza Reyes 95. Yecenia Vélez 96. Yesibel Castro 97. Zaira Rosario-Pabón 98. Zuleyka Muriel

26 V. Evaluation Tool

27 EVALUATION. ETHICAL ASPECTS FOR PATIENTS INVOLVEMENT IN RESEARCH AUGUST 31,2018 Verdanza Hotel - Carolina, PR Make a check mark ( ) in the column that reflects your answer. Completely STATEMENTS Agree The registration process was organized The physical facilities were adequate for the amount of people and the activities organized The audiovisual resources were adequate. The written material was pertinent and necessary to complete the programmed activities. The participation of those attending the activity was encouraged. The time dedicated to the activity was sufficient There was an adequate balance between presentations, discussion and other activities. The order in which the information was presented helped achieve the objectives. The small group discussion sessions had direction and purpose. Agree Disagree Completely Disagree N= The use of discussion groups was successful in achieving the objectives. The facilitators of the discussion in the groups demonstrated mastery of their task. The panelists and lecturers demonstrated mastery of their subject. The moderators of the panels controlled the use of time and helped the panel to flow The reactors to the presentations of the panelists made good contributions in the discussion of the topics. The content and vocabulary used were adequate for diversity in the audience. The activity satisfied my expectations Do you have any recommendation that can help us improve the organization, content and strategies in future activities?

28 PMB 140, 1357 Ashford Ave. San Juan, PR 00907