EDUCATION & TRAINING

Implementation Science

Living with Sickle Cell Disease: patients perspectives on education and self management

Improving Sickle Cell Care in Adolescents and Adults in Chicago (ISAAC) is a study designed to improve clinical care and patient outcomes of people with Sickle Cell Disease by designing, testing and implementing an integrated model of longitudinal and emergency care.

This video was prepared by Sarah Norell to summarize some of the findings of the needs assessment and proposes educational approaches for the individuals with Sickle Cell Disease.

Implementation Science - Capacity development

Implementation science is still a relatively new, multidisciplinary field of science. The Global Alliance for Chronic Diseases (GACD) encourages research capacity strengthening in implementation science particularly around Non Communicable Diseases (NCDs), through events, training programmes, and other activities to increase the skills, knowledge, and confidence of individuals and institutions to conduct high-quality implementation research and engage with all relevant stakeholders. Access the training material here.

Resources for Implementation Science Researchers

Resources for Implementation Science (IS) Researchers is a collection including resources for IS practice, training and community-based and participatory research tools. This toolkit is a product of and for the Learning Collaborative for Implementation Science in Global Brain Disorders, which was initiated and is hosted by the Center for Global Health Studies at the Fogarty International Center, National Institutes of Health (NIH). The resources are available here.

Seven Approaches to Investing in Implementation Research in Low- and MiddleIncome Countries

This document arose from the recognition that, by sharing good practices, funding and research organizations can enhance the ways in which they invest in implementation research (IR) as well as build capacity in low and middle-income countries. A literature review was completed and a survey was conducted to learn whether and how ESSENCE members fund or use IR. In addition, semi-structured interviews were held with key funders to identify opportunities and challenges that they face when they invest in IR in LMICs. A number of focus groups and consultations were carried out as well. Read the full document here.

Approximate model for online resource library for ARISE could be a hybrid of the CDC.gov webpages for sickle cell https://www.cdc.gov/ncbddd/sicklecell/index.html   and the website for HRSA HIV/AIDS Bureau https://hab.hrsa.gov/publications . This might serve as a Library or Toolkit for the education/training activities in Work Packages 2, 4, 5, 7 because some material is core information that is good for educating families, counseling, training CHEW, and even training clinicians.

  1. Content stored online, has keywords or clustered in webpages to allow search for topics and for audiences
    1. PDF text https://www.cdc.gov/ncbddd/sicklecell/materials/factsheets.html    https://www.cdc.gov/ncbddd/sicklecell/healthyliving.html   https://www.cdc.gov/ncbddd/sicklecell/traits.html
    2. Pictures and infographics
      1. https://www.cdc.gov/ncbddd/sicklecell/images/infographic-5-facts-1185px.jpg
      2. https://www.cdc.gov/ncbddd/sicklecell/documents/tipsheets_guide.pdf
    3. Videos? Podcasts?
      1.  https://hab.hrsa.gov/livinghistory/
      2. https://www.cdc.gov/ncbddd/sicklecell/materials/video.html
      3. https://www.cdc.gov/ncbddd/sicklecell/stories.html
    4. PowerPoint presentations
      1. https://targethiv.org/
      2. https://hab.hrsa.gov/about-ryan-white-hivaids-program/part-f-aids-education-and-training-centers-aetc-program
      3. https://sickleemergency.duke.edu/educational-resources/short-presentations-online-learning
      4. http://www.bioethicsinstitute.org/research/projects-2/hope/sickle-cell-disease-facilitators-guide
    5. Clinical guidelines and Model programs for specific clinical scenarios  – these can be presented in different ways but I really like the HIV/AIDS Bureau examples.
      1. https://hab.hrsa.gov/clinical-quality-management/clinical-care-guidelines-and-resources
      2. https://hab.hrsa.gov/about-ryan-white-hivaids-program/spns-workforce-building
      3. https://hab.hrsa.gov/about-ryan-white-hivaids-program/special-projects-national-significance-spns-program-initiative-products
      4. https://hab.hrsa.gov/sites/default/files/hab/Publications/careactionnewsletter/june2011.pdf
      5. https://hab.hrsa.gov/publications/library/2013-hiv-continuum-care-tennessee
      6. Clinician training video  https://sickleemergency.duke.edu/educational-resources/videos
  2. Download modules of materials