Sharing Knowledge: Human Variome ProjectInitiatives in Education and SkillsDevelopment                   Linda Roberts    ...
BackgroundHVP Education Working Group Independent group, emerged in 2008 from 3  other groups: Ethics, Data Integration &...
Methods A Web-based survey was conducted to solicit  thoughts and opinions of the HVP constituency Email invitation in F...
Survey ContentThere were 6 questions asking about:• Purpose of the working group• Specific unmet educational needs• Countr...
101 Respondents, all continentsTypes of people responding         Organizations representedClinical Geneticists           ...
80% Perceived a Need for EducationalSessions   Question 3c. Who should these potential educational targets be?            ...
Specific Unmet Educational NeedsQuestion 3a and 3b: What specific unmet educational needs exist? What topics do you think ...
Approaches for Structuring EducationalProgrammingQuestion 5: How shall the HVP approach structuring proposed Educational P...
What should the purpose of thisEducation Working Group be? Themes from n=71 responses   Collaboration – help in accessin...
Country Specific ChallengesQuestion 4b: Are there issues or challenges specific to your country that you would liketo see ...
Existing Educational Standards & CoreCompetencies  ESHG – European Society of Human Genetics  NCHPEG – National Coalitio...
Action Items from the2010 HVP Education Forum (1)Validate educational tools and programs with  international societies (AS...
Action Items from the2010 HVP Education Forum (2)Write a paper to bring up these issues:  Genetic disease is important  Pr...
AcknowlegementsRichard Cotton                 Suzanne AlbustanCarol Barash                   Rania HoraitisElizabeth Shepa...
Collaboration                                  Standardize / Unify data-among different groups                            ...
Topics to Discuss• Curriculum Assessment and Accreditation• Role for HVP in education at multiple  levels of medical train...
HVP Pillar : Building Capacity •   What value-added contribution can HVP make – not re-inventing the wheel     or duplicat...
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Sharing Knowledge: Human Variome Project initiatives in education and skills development

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Sharing Knowledge is one of the four key themes underlying Project Roadmap 2012-2016, the Human Variome Project’s strategic plan for the next five years and a focus for this meeting. This session built on the outcome of the Project’s Education Satellite meeting, held in November of 2010 and sought to clarify and expand the Human Variome Project’s precise role in education and skills development initiatives. Specifically, it discussed: the global importance of learning and development, including the inclusion of young and early-career clinicians and researchers; existing national and international resources and initiatives that can be leveraged; the role of assessment, evaluation and accreditation of curriculum at the national level; and the Project’s role in medical education, post-grad training, professional development and continuing education for clinicians, diagnosticians, counsellors etc.

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  • the 2ndintl meeting meeting in spainThere was talk about education through out the meeting – from ethics and Developing CountriesEducational Needs survey to determine existing and anticipated educational needs to further the Project’s Goals.
  • It was CIB and LR and MG who designed that final version of the questions with input with others from the committee.And we shared with them that the survey should take a maximum of 8 minutes to complete. And I believe there were 2 additional reminders sent – via mail distribution list.We incorporated a mixed venue of questions – select all responses that apply, open ended and specify is other.Survey was open for just one month.In the spirit of collaboration – we wished to welcome and give credit for individual contributions.
  • What are the products or end results of this working group. Evaluation4 sets of education material.Society/patients (Lay people)Clinical specialistsFunding bodies agencies, governmentsOurselves – means genetic specials already involved – strategies for funding – already have buy in – but need direction to go further.- those who are interested but go home and supports, need basic indication to get started. DEVELOP materials:Why edu important, difficulties etc. Discuss structure, methodologies applicable to each education task and focus.
  • This represents the number of people responding – NOT percentage.clinicians were the largest number…….under other specify…..Other specify: laboratory scientists, genetic counselors, journalists, potential funding sources, diagnostic scientists, media, politicians, regulatory bodies, educators, informatics personal, undergraduates and graduates, genetic diagnostic labs, Medical/Dental curriculum directors, biochemists
  • Most frequently chosen category for unmet need was Methods to interpret variants ……..With respect to other needs – respondents told us**Other needs: Future trends, submission and searching, incorporation of genetics into clinical workflow, criteria for variation/phenotype associations, environment effects on genetic expressions, collection of cohorts of samples for genetics, functional expression of mutants in appropriate cells lines to assist in pathogenicity assessment.
  • Other ideas were mentioned and are available in the report which will be posted on the HVP website.*Other suggestions: Conference call and email list, workshops with policymakers, mailing list for ad hoc questions and answers, form local working groups, use HGVS, develop PowerPoint talks summarizing HVP work, provide funding to attend these meeting, create documented, indexed and searchable in the ideal world.
  • We received n=71 responses. We identified the common themesWe believe these are a manageble number of “Categories/themes” from which we can develop objectives and make recommendations
  • As a starting point…..there were three groups in different parts of the world that came up with the same idea of setting KSA’s
  • Engage journalists and guide them to what you would like them to write
  • Sharing Knowledge: Human Variome Project initiatives in education and skills development

    1. 1. Sharing Knowledge: Human Variome ProjectInitiatives in Education and SkillsDevelopment Linda Roberts University of Vermont College of Nursing and Health Sciences 12 June 2012 UNESCO, Paris, France
    2. 2. BackgroundHVP Education Working Group Independent group, emerged in 2008 from 3 other groups: Ethics, Data Integration & Access, and Developing Countries. Charged to conduct an Educational Needs Assessment, completed in Feb 2010 and presented at HVP Forum in November 2010 UNESCO, Paris, 2012 2
    3. 3. Methods A Web-based survey was conducted to solicit thoughts and opinions of the HVP constituency Email invitation in Feb 2010 to participate  Included HVP members and colleagues and others  Menu with choices to check, and Open-ended responses UNESCO, Paris, 2012 3
    4. 4. Survey ContentThere were 6 questions asking about:• Purpose of the working group• Specific unmet educational needs• Country specific emerging issues and challenges• Ideas for structuring programming UNESCO, Paris, 2012 4
    5. 5. 101 Respondents, all continentsTypes of people responding Organizations representedClinical Geneticists Molecular laboratoriesMolecular Genetics Faculty Centers for GenomicsPhD Researchers HospitalsDatabase Coordinators Government research labsInformaticians Centers for GeneticsPolicy and Standards Education UNESCO, Paris, 2012 5
    6. 6. 80% Perceived a Need for EducationalSessions Question 3c. Who should these potential educational targets be? UNESCO, Paris, 2012 6
    7. 7. Specific Unmet Educational NeedsQuestion 3a and 3b: What specific unmet educational needs exist? What topics do you think wouldbe useful for educational sessions for HVP participants? Responses Specific Diseases Molecular Diagnostics Technologies DatabasesInformatics / Interpretative software Methods to interpet variants ELSCI* Regulatory / Governmental Policy Other needs** 0 20 40 60 80 *Ethical, Legal, Social, Cultural Implications UNESCO, Paris, 2012 7
    8. 8. Approaches for Structuring EducationalProgrammingQuestion 5: How shall the HVP approach structuring proposed Educational Programs? UNESCO, Paris, 2012 8
    9. 9. What should the purpose of thisEducation Working Group be? Themes from n=71 responses  Collaboration – help in accessing educational resources, standardizing and unifying of data  Sharing- e.g. curricula, tools  Whom to Educate- stake holders, other scientists, policymakers, patients. There was an urgency to “POPULARIZE” and make people aware  Development of teaching/training materials UNESCO, Paris, 2012 9
    10. 10. Country Specific ChallengesQuestion 4b: Are there issues or challenges specific to your country that you would liketo see the HVP address? Comments:  Interpreting/classifying variants, correlate with pathology (n=5)  Lack of Funding (n=4)  Policy makers/regulation (n=4)  Cultural delays in adoption (Italy, India, Kuwait) UNESCO, Paris, 2012 10
    11. 11. Existing Educational Standards & CoreCompetencies  ESHG – European Society of Human Genetics  NCHPEG – National Coalition for Health Professional Education in Genetics  HGSA – Human Genetic Society of Australasia Assessed curriculum: Knowledge, Skills, Attitudes, Learning Objectives UNESCO, Paris, 2012 11
    12. 12. Action Items from the2010 HVP Education Forum (1)Validate educational tools and programs with international societies (ASHG, ESHG, etc)Develop validated Web resources: Target MDs and other professionals, public Translate into multiple languagesUse Social Media Enhance the HVP web site and Facebook page, blogs UNESCO, Paris, 2012 12
    13. 13. Action Items from the2010 HVP Education Forum (2)Write a paper to bring up these issues: Genetic disease is important Primary care MDs are inadequately trained Use (re)-certification exams as incentive HVP can provide tools and standardsEngage journalists, “write the story” UNESCO, Paris, 2012 13
    14. 14. AcknowlegementsRichard Cotton Suzanne AlbustanCarol Barash Rania HoraitisElizabeth Shepard Heather HowardIan Phillips Lauren MartinMing Qi Jumana Al amaIngrid Winship Hamed SherifaRay Dagleish Sue PoveyAgnes Bankier Susie Sobrido UNESCO, Paris, 2012 14
    15. 15. Collaboration Standardize / Unify data-among different groups Access existing resources Sharing of EducationInformation -stakeholders -other scientists and young scientists - materials/workshops -popularize/raise awarenessTeaching/Training -Curriculum - Scientists Patient Education -strategies for patients/ familiarize individuals UNESCO, Paris, 2012 15
    16. 16. Topics to Discuss• Curriculum Assessment and Accreditation• Role for HVP in education at multiple levels of medical training and the public• Existing national and international resources that can be leveraged• How to use clinicians and scientists, especially early career UNESCO, Paris, 2012 16
    17. 17. HVP Pillar : Building Capacity • What value-added contribution can HVP make – not re-inventing the wheel or duplicating? • HVP secretariat, Consortium members, greater global stakeholders – ripple effect of Human Variome Project • Coordination, facilitation and clearing house • Focus on developing countries; international collaboration 1. Curriculum, etc. (recommendations for online and free educational resources) 2. Role at multiple levels (advocacy with politicians, training workshops on HPV and specific subjects) 3. National & international resources (NGOs, scientific associations, societies. Networks, intergovernmental organisations, e.g ICGEB, UN) 4. Early career scientists and clinicians (promote “twinning” between resource- rich and resource-constrained groups/countries

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