Michael Pistiner MD,MMSc

1. Opportunities and Challenges Presented by Food Allergies Michael Pistiner MD,MMSc

2. Questions to think about for the design of an app include: • The differences between initial and repeat visits in terms of an app • The reasons why a patient is there - urgent, routine, follow up - and the different needs for history and education • Who is with a patient and the implications - one parent, both parents, caregiver • Who cares for or involved in the care of a patient who isn't there - babysitter, teacher, grandparents • How can taking a history be done outside of the appointment, either at home or in waiting room,  to use appointment time for reviewing it and for patient care • What information is available at home or other locations but not in doctor's office such as medicine cabinet • What forms of education can take place outside of appointment or in waiting room and what should take place in appointment • What do families currently do for education, support, or tracking and what should be integrated into an appointment • Would people be skeptical or cynical about the app or would they embrace it? • How does an app fit in with an EHR or PHR? With HIPAA?

3. Health "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." -WHO

4. Health Important determinants of health Medical care (10% preventable mortality) Behavioral (40%) Social (15%) Environmental (5%) Genetic (30%) We must encourage disease prevention and health promotion J.M McGinnis, et. al. Health Affairs. 2002; 21 (2):78-93

5. Bringing Health is Not Easy • Patient care has truly become challenging • We need to provide thorough and compassionate care and promote health despite constraints of time and resources

6. Allergy Care

7. Practical Food Allergy Management Emergency Preparedness Prevention These must be applied at all times and in all settings

8. It Takes a Community to Protect a Child With Food Allergies

9. Who provides that community with food allergy education? • Primary Caregivers • Medical Community • Food Allergy Education/Support Groups • Media Focus

10. Unmet Education Needs of Primary Care Givers • Inadequate education time • 30 minutes is not enough time to become competent or confident in food allergy management • Inadequate education resources • Many don’t have the resources, time, or foresight to research on their own • Current teaching tools are scattered and hard to find (no source for free, one stop information gathering)

11. Unmet Food Allergy Needs • Studies of parental knowledge demonstrate clear deficits in • Competency in epinephrine administration(Arkwright, et al. Pediatric Allergy Immunology 2006;17(3):227-9) (Pouessel, et al. Pediatric Allergy Immunology 2006; 17(3):221-6) • Allergen avoidance(Joshi, et al. JACI. 2002;109(6):1019-21) • Information provision(Hu, et al. Arch Dis Child 2007;92:771-5)

12. Parental food allergy information needs: a qualitative study • Setting • 3 Australian pediatric allergy clinics (30 minute initial consult/6mo wait) • 84 parents of children with food allergy. • Methods • in-depth semi-structured interviews and focus group discussions • Findings • Identified different phases in information needs: at diagnosis (intense desire for information), at follow-up (continuing uncertainty severity and appropriate management), and at new events and milestones • Parents preferred being given the choice of a variety of formats • Identified areas of core information needs including • how to educate extended family and other carers and adults • practical allergen avoidance • when and how to give epinephrine auto-injector (Hu, et al. Arch Dis Child 2007;92:771-5)

13. Secondary Care Providers Doctor/Nurse/etc Primary Care Givers Teaching? Demonstrations? Allergy Action Plan? 30 minute visit Teaching? Demonstrations? Interest? Concern? Time? Instruction sheets? Allergy Action Plan? statistics statistics statistics • Pediatricians (mean practicing 14 yrs and 4 epinephrine prescriptions/year) • 24% gave written materials concerning indications. • 21% correctly demonstrated (Sicherer et al. Pediatrics 2000;105;359-362) • At ED discharge [Multicenter ED Chart Review (those with severe rxns)] • 35% given avoidance instructions • 22% were given a prescription for self-injectable epinephrine • (Clark. et al. JACI. 2004) • 32-57% able to properly demonstrate self-injectable epinephrine administration (prescribed ~3yrs prior) • Majority don’t know the indications to administer self-injectable epinephrine • Many don’t have self-injectable epinephrine available • (Sicherer et al. Pediatrics 2000;105;359-362) • (Arkwright, et al. Pediatric Allergy Immunology 2006;17(3):227-9), • (Pouessel, et al. Pediatric Allergy Immunology 2006; 17(3):221-6)

14. Secondary Care Providers ? ? Doctor/Nurse/etc. Primary Care Givers A high stakes game of telephone • If these are the statistics for the physicians and • primary care givers then how can they effectively • teach secondary care givers? • Unmet Need: Parents need a way to refresh their own skills and teach others how to recognize and treat anaphylaxis and to avoid allergens.

15. Secondary Care Providers Doctor/Nurse/etc Primary Care Givers Solution: Provide accurate, succinct, easy to access educational videos/material that can be a resource at all points of the information chain

16. Benefits of Multimedia Food Allergy Management Education 1° Objective • Assist Transition in Care • Help direct education • Increase awareness of danger points • Easy access teaching tools when ready • Give validity and get all caregivers on the same page (grandma may take it more seriously if she hears it from a doctor) • Augment food allergy management provided by physicians in variety of settings • Provide a refresher that families can go to • Provide a teaching aid

17. Strengths of Multimedia Educational Aids • Increased standardization of information provided • Enhanced education (especially in those with limited literacy)(Murphy et al. Southern Medical Journal. 2000;93:291-304) • Utilizes both auditory-verbal and visual-pictoral channel (Mayer 2002) • Patients/caregivers with lower baseline knowledge benefited more than those with higher baseline knowledge • Aids that provided more information demonstrated increased knowledge/larger amount of information can be presented • Video/Behavioral Modeling • Viewers identify with the models acting in the videotapes and perceive themselves as also capable of making decisions and performing care • Effective method for achieving desired patient outcomes (Gagliano, 1998) • Patients/caregivers can take as much time as they need and review as many times as necessary (Jeste et al. Journal of Psychiatric Research. 2008. 42:1-21)

18. Thank You!Questions? michaelpistiner@gmail.com AllergyHome.org

19. Questions to think about for the design of an app include: • The differences between initial and repeat visits in terms of an app • The reasons why a patient is there - urgent, routine, follow up - and the different needs for history and education • Who is with a patient and the implications - one parent, both parents, caregiver • Who cares for or involved in the care of a patient who isn't there - babysitter, teacher, grandparents • How can taking a history be done outside of the appointment, either at home or in waiting room,  to use appointment time for reviewing it and for patient care • What information is available at home or other locations but not in doctor's office such as medicine cabinet • What forms of education can take place outside of appointment or in waiting room and what should take place in appointment • What do families currently do for education, support, or tracking and what should be integrated into an appointment • Would people be skeptical or cynical about the app or would they embrace it? • How does an app fit in with an EHR or PHR? With HIPAA?