1. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 José C. Lacal Senior Manager; Seamless Health Research IEEE-SA Study Group “Personalized Health Informatics” – PAR Proposal

2. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 2 Frame: “Health” vs. “Healthcare”..students of medical economics have long realized that what consumers demand when they purchase medical services are not these services per se but rather better health.[1][1] Throughout this paper I refer to “health IT” standards, as opposed to “healthcare IT” standards. The difference is huge, in my opinion: “Healthcare” refers to the current paradigm of provider-based, illness-centric services. “Health IT” is a broader term that may or not include a provider, and where the main focus is health maintenance and promotion at the individual level. There are a plethora of healthcare IT standards already in place, and many more are under development. So much so that a recent project tracks all of those standards via a “map” of sort, the Health Care Standards Landscape. Significantly all of those (current and proposed) standards are provider- centric; that is, they place the healthcare provider (physician, clinic or hospital) at the center of and as the host of such healthcare IT systems.

3. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 3 Frame: “Fix” vs. “Maintain and Enhance” The current healthcare paradigm is mostly focused on “fixing” the individual once she presents symptoms of an illness or health condition. Once a health condition has manifested itself, the available opportunities for cost-savings are very limited, and the damage to the individual’s health is mostly done. Contrary to the prevailing paradigm, I advance the idea of patient-centric, family-driven health maintenance and enhancement. A framework is outlined for standards to enable Personalized Health Informatics (“PHI”). This is not about healthcare; this is about enhancing individuals’ and families’ health. And, as a direct consequence, society’s health.

4. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 4 The Need for a new Health Care Paradigm The health care systems in all developed countries are currently facing an economic tsunami due to the convergence of three dramatic forces that will force “pushing” of health services outside of traditional health care facilities. Massive Demographic Changes Exploding Social Costs Increased Life Expectancy Epidemiologic Transition Mis-match Between Healthcare Expenditures and Social Needs Public Health vs. Medicine The Dis-empowerment of the Patient No Formal US Healthcare System From Evidence-Based Medicine to Evidence-Based HealthFrom Evidence-Based Medicine to Evidence-Based Health Provider-based Standards are not EnoughProvider-based Standards are not Enough The Third Era of Health – “Increasingly, the goal is a long and fruitful life, not simply the absence of disease. That potential and the effort to achieve it compose the third era of health.”

5. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 5 Personalized Health Informatics Standards Comprehensive set of Internet- based tools that place the individual (and his/her dependents) at the center of an encompassing architecture of services that promote and enhance health. There is a need for PHI systems to manage all the relationships that influence an individual’s health. The end goal for the proposed PHI standards is to facilitate a world of consumer-mandated demand for data to be posted to her own health-related record. Using the analogy of credit card adoption rates: PHI standards will allow consumers to demand that providers deliver their data to the consumer’s health record. “If you are not PHI-enabled, I will not use your services.” Clear, open, and widely-adopted standards will make this “PHI enabled” sign as ubiquitous as the “We accept Visa, MC, Discover” signs at merchants. IEEE can lead this effort.

6. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 6 PHI as a key Enabler of Seamless Health Physical ownership: the person’s data will go with her, (her health data is hers, not the provider’s) Across providers Across employers / payers Across time and distance (longitudinal and permanent in nature) Emphasizes prevention (not just cure and treatments) (US-specific) manage the enormous amount of paperwork and bills generated when an individual goes through the healthcare system. Focused on the family as the unit of care (each person is truly embedded into a larger family unit) Available from everywhere: “Wherever I Go, It’s There” (WIGIT). If a person can access her money via ATMs from Alberta, Canada to Auckland, Australia, why can’t she access her health information and individualized advice just as easily?

7. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 7 Person-Centered Approach to Health Care

8. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 8 PHI System Overview Difference between PHR and PHI: PHRs (Personal Health Records) are conceptualized primarily based on treatment, illness points of care. PHI looks at the entire longitudinal health record for each individual. Think of PHI in terms of the “iPod of personalized health empowerment.” PHI is all about delivering health via a new mechanism: at the user’s convenience; organized. Where we disappear the “how things happen” into “here is what is applicable to your current needs, now.”

9. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 9 PHI and Healthcare Standards

10. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 10 Layer 01 - Person The essence of PHI is that the system has to be Person-centric, and revolve around the individual’s own needs. The current healthcare system is provider- centric, with multiple limitations that need to be addressed, reversed or upended altogether as follows: A person-centric approach allows for the compilation of a unified longitudinal record of her health status throughout her life. A provider-centric model creates a “breadcrumbs trail” of a person’s health data spread across time and geography as that person goes through her life. A person-centric approach allows for a personalized health maintenance and recovery plan that is best suited to her changing life conditions.

11. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 11 Layer 02 – Family PHI’s premise is that the family is the most appropriate unit of care. Evidence suggests that every individual’s health status is directly correlated with her family’s Socio Economic Status (SES)[1]. A person’s health management and treatment plans can not be treated separately from her family environment.[1] In the case of minor children, those with disabilities, and dependent elderly adults, any and all health-related decisions will have a family-wide impact. And the implementation of any health-related treatment plan will be carried out within a family context. Health behaviors are most effectively changed by addressing the family context where the person operates.[2][2]

12. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 12 Layer 03 – Open Health Knowledge There is a wide availability of free and scientifically-sound health-related content currently available on the Internet. From the National Guideline Clearinghouse to hundreds of Open Journals, an individual can access a huge amount of relevant health information at no cost. Open Health Knowledge is a term to refer to the mechanisms that could allow individuals to extract relevant, individualized advice out of this massive (and confusing) wealth of available health resources. Through 03 processes: Filter Data Interpret (Extract) Meaning

13. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 13 Layer 04 – Nutrition You Are What You Eat. There is a growing scientific interest in analyzing the impact that nutrition has on an individual’s mental health[1] and her mood on a daily basis.[2][1][2] It is of crucial importance to provide individuals with information to allow them to reach their health goals. By: Data mining on the available dietary guidelines from reputable sources.[3][3] Based on each person’s unique needs, fine-tune her nutritional intake to her level of physical activity. Given the clear impact that poor nutrition has at both the individual and the population level, increasing attention is being paid to how to motivate individuals to improve their dietary patterns.

14. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 14 Layer 05 – Environment There are clearly-documented connections between the environment an individual lives in and her health status.[1][1] Those impacts take place in several settings, and under different (if any) regulatory guidelines: Home School Workplace This layer operates at three levels: Monitoring Surveillance Response

15. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 15 Layer 06 – Devices This layer is designed to facilitate an interface between an individual and the health-oriented devices she uses throughout her life. Whether while healthy (for example prevention- oriented devices) or during the recovery after an illness or injury (rehabilitation, treatment). The layer operates at three levels: In-hospital Outpatient Home IEEE 1073 focuses on this layer.

16. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 16 Layer 07 – Providers This layer represents all the current providers operating within the existing health, public health, and healthcare spaces. Both HL7 and HITSP focus on this layer.

17. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 17 Vertical Layer – Public Health Personalized Health Informatics has a very strong focus on Public Health (bio-surveillance included). The proposed goals for PHI are aligned with those of Public Health: Prevents epidemics and the spread of disease Protects against environmental hazards Prevents injuries Promotes and encourages healthy behaviors Responds to disasters and assists communities in recovery Assures the quality and accessibility of health services

18. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 18 Vertical Layer – Regulatory Agencies Additional material will be added here on ways to leverage existing sources of public information made available by regulatory agencies. Among those possibilities are: Use agencies’ databases for validated environmental, nutritional information Data mining of databases documenting adverse drug effects to generate personalized alerts to users of those drugs

19. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 19 Electronic Bill Payment & Presentment

20. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 20 In Closing: Take Home Points Focus on health improvement – limited savings on critical care – lower burden of chronic disease Individual as the Point of Care – not the house, institution, office Family as the unit of care: – empower Mom, the defacto Chief Medical Officer Personal Health Records – owned by the family – provide service across jobs, HMOs, hospitals, physicians Who would host PHI system? – Financial institutions / brokers – Quicken / Microsoft Money – US Postal Service – Google (eg. “Google Health”) Looking for active partners to pursue an IEEE PAR. Credit: prototype server built using www.SugarCRM.orgwww.SugarCRM.org Jose.Lacal@Motorola.com

21. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 Motorola’s PHI Prototype System

22. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 22 Mom, the Chief Medical Officer Family health dashboard: dependents’ status: Summary of bio-physical readings Readings from sensors in parents’ home Summaries from all published research Recommended dietary guidelines Storage of family’s medical records Latest evidence-based guidelines published Available via cellphone, PDA, office, home Everything is technologically possible NOW. The question is why isn’t this level of service and patient-centered focus available to consumers today. CRM for Family Health Improvement

23. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 23

24. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 24

25. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 25

26. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 26

27. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 27

28. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 28

29. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 29

30. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 30

31. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 31 Backup

32. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 32 No Formal US Health Delivery System..The most striking feature of the employed, insured, middle-income system of care is the absence of any formal system. Each family puts together an informal set of services and facilities to meet its own needs. The system, therefore, has no formal structure or organization and is different for each individual or family. Indeed, each family’s system may vary widely according to the particular situation in which it is used. The only constant feature of this system is the family itself; all other aspects are transient, changeable, and widely varied...In summary, the employed, insured, middle-income family’s system of health care has been an informal, unstructured collection of individual services put together by the patient and the private physician to meet the needs of the moment. The individual services themselves have had little formalized interrelationship, and the only thread of continuity is provided by the family physician or by the family itself. In general, all of the services are provided by non- governmental sources and are paid for by private funds, either directly out-of-pocket or by privately financed health insurance plans. Source: “Introduction to Health Services.” 6th Edition; Stephen J. Williams; Paul R. Torrens; Delmar Thompson Learning; 2002. p. 21-22.

33. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 33 From EBM to Evidence-Based Health Evidence-Based Medicine: how to treat sick patients. Evidence-Based Health (“EBH”): dissemination of best- practices to keep people healthy and prevent illness. Healthcare system not geared towards optimizing health: –focused on repairing bodily damage –few incentives to improve, maintain patients’ health –dis-organized and not coordinated across providers Growing consumer interest in staying healthy. Demographic wave: push health services out of facilities Challenge of deploying HIT in Less-Developed Countries

34. MOTOROLA and the Stylized M Logo are registered in the US Patent & Trademark Office. All other product or service names are the property of their respective owners. © Motorola, Inc. 2005 34 Provider-based Standards are not Enough Asymmetry of Rewards Provider-centric EHRs are Vulnerable Vendors’ Competing Interests