1. Unpaid Caregivers: Integral to Healthcare Ellen V. Makar, MSN, RN-BC, CCM, CPHIMS, CENP FACA- Subgroup On Health IT Workforce Development February 14, 2014 In the US and UK

2. Unpaid. Unappreciated. Untrained. Undercounted. Exhausted. But vital. “America’s stealth weapon against chronic illness is a 46-year-old woman with a family, a high-school degree, a full-time job and a household income of $35,000. She has no particular training in health care. And, to tell you the truth, sometimes she doesn’t feel that great herself…” -- AMA Medical News, 2001

3. Disability Surveys: 4.8 Million (n=4 surveys) Caregiver Self-identification Surveys 24.4 Million (n=4 surveys)

4. Types of Assistance by Companion During Physician Visit 3 Source: Wolff and Roter, Archives of Internal Medicine, 2008

5. Connecting Caregivers 4

6. “Carers”: UK

7. “Caregivers” : US 6

8. Research and Policy Opportunities: Who provides care? Consistent terminology, definitions, estimates of size of workforce Who needs care? Distinguish core “scope of practice” triggers and opportunities for learning: age groups, conditions, settings of care? What are the impacts, costs and benefits? Enable understanding of status quo; payment and delivery incentives to support population-based health that include and value family caregivers. Opportunities to Move Beyond a Shadow Workforce to Valued Partners in Patient Care