Patients as P-values Partners

1. Bray Patrick-Lake, MFS Patients as P-values Partners

2. IOM Definition of Patient-Centered Care • “Healthcare that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients'wants, needs, and preferences and that patients have theeducation and support they need to make decisions and participate in their own care.” Institute of Medicine Committee on Quality of Health Care in America. Crossing the Quality Chasm: A New Health System for the 21st Century. Washington, DC: National Academies Press, 2001.

3. Patients Asleep at the Wheel Family photo 2004 here Enjoying good health, attending annual exams, and not thinking of ourselves as patients prior to a life altering medical event or diagnosis

4. As They Say Ignorance is Bliss, or Is It?Navigating the System • No one prepares you on how to be a good patient before you become a patient • Unless we have another ongoing health condition, many patients have never given thought to: • disease management • trusted sources of medical information • online support • risks vs. benefits • health outcomes • motivations

5. A lot has changed since the days of Marcus Welby, M.D. • The golden age of paternalism has ended • Physicians no longer have the luxury of knowing a family and its values over decades of continuous care

6. Physician-Patient Relationships • Younger patients may embrace greater autonomy, but could be unprepared to navigate health care decision-making. • Older patients may feel paralyzed or overwhelmed by complex information or technology and apprehensive about participating in their health care decisions. • Some don’t want to be responsible for participating in their own decisions. What would you do if I was your family member?

7. Who are P and X?Getting to Know Patients as People • The patient may be the confounder • Health literacy may affect compliance and rates of patient errors • Lifestyle may hinder adherence to treatment protocol • Mental health status may influence patient motivation • Religious preferences may cause patients to reject a proven treatment completely

8. Education and Tools:Are your patients getting their information from a trusted source?

9. Coffee either causes or cures cancer … depending on who you believe

10. Engagement and Participation • Patients want to be part of a health care community that allows them to participate in their care when they live with diseases that affect their daily lives. • Information hungry patients are increasingly using online resources and communities in attempt to improve their outcomes.1 • But (!), are they engaging with a trusted source? - Wicks, P., et al. “Sharing Health Data for Better Outcomes on PatientsLikeMe.” Journal of Medical Internet Research: Vol. 12, No. 2

11. There is a need for online communities supported by qualified cardiology professionals.

12. Patients want data even if they don’t know what to do with it. Empowerment:

13. Patients‘ Interpretation of Data Good Data From Best to Worst Translation to Patients 隨機雙盲對照研究 观察性研究 病例對照研究 案例系列 病例報告 想法，意見 • Randomized Controlled Double Blind Studies • Observational Studies • Case Control Studies • Case Series • Case Reports • Ideas, Opinions Where do Observational Data, like that in Registries, come in?

14. What exactly is unbiased scientific information and how do patients get it? • Data collected in a scientifically meaningful way with human subjects thoroughly protected and withfull disclosure of results. • Data presented to patients without therapeutic or product preference during an open informed consent process or by a shared decision making tool that is supported by evidence and not eminence. • Data that is presented by a non-financially interested party such as a professional society or patient group.

15. Registries and Registry Networks --- like the ACC’s --- are the Golden Goose! Goodbye eminence-based medicine, hello evidence-based medicine. Now if only someone could translate the results and make the data meaningful to me as an N of 1 when I make decisions about my treatment. Would like something less promotional about ACC; perhaps: “Registries and Registry Networks --- like the ACC’s --- are the Golden Goose”

16. Challenges: Health care reform is being pushed through on the backs of providers Less billable time to spend educating patients about their conditions and increasingly complex novel therapies More time spent on documentation and overcoming insurance denials

17. Per CardioSource: Misconception #1 PCC Costs Too Much • PCC can be enhanced with technology, office and hospital renovations, and equipment • Changes in attitude, kindness and personalized care optimize patient and family interactions • You do not need more staff and better technology to implement PCC

18. PCC has been shown to: • Improve disease-related outcomes and quality of life; • Increase patient adherence to medications and improve chronic disease control; • Boost well-being by reducing anxiety and depression; • Address racial, ethnic, and socioeconomic disparities in care and outcomes; and • Reduce overuse of diagnostic testing and some procedures. - Epstein RM, et al. “Why the Nation Needs a Policy Push on Patient-Centered Health Care,” Health Affairs 2010;8:1489.

19. Conclusions • Patients are craving education, engagement and empowerment and must be seen as more than a P-value. • Trusted relationships with cardiovascular team members are key in helping patients achieve their desired outcomes. • Wheels will continue to spin until patients connect with a trusted source of unbiased scientific information and educational tools that meets their holistic needs. Suggest remove last bullet -- the audience is not physicians and CardioSmart should be reserved for the panel discussion