Digital technologies like wireless sensors, genomics, EHRs, mobile apps, and big data analytics can significantly help patients but cannot replace human compassion and advocacy. These technologies can improve patient engagement, access to information, and personalized care. However, the most effective patient advocates will still be human beings who can combine technology tools with qualities like empathy, communication skills, and devotion of time to help patients navigate the healthcare system.

1. Digital Health Technology:
The Ultimate Patient Advocate
David Lee Scher, MD, FACC, FHRS
DLS Healthcare Consulting, LLC
Harrisburg, PA
digitalhealthconsultants.com
Arkansas HIMSS2012
June 1, 2012

2. “The most valuable commodity that I know of is
information”. –Gordon Gekko

4. Patient Advocate: Definition
• Wiki: “Patient advocacy is an area of lay specialization
in health care concerned with patient education about the
use of health plans and how to obtain needed care.”
• “In its simplest terms, patient advocacy regards any
activity which ultimately benefits a patient. Using that
definition, it can apply to caregiving for an individual
patient, to groups that develop policies and advice that
help patients, to government groups that develop
legislation to improve systems or processes for patients”
----Trisha Torrey

5. What is the Ultimate Patient Advocate?
• A human being with:
– Infinite compassion, energy, time, money, patience.
– Expert in medicine, healthcare law, insurance
coverage issues, technology, hospital
management, government regulations, logistics.
– Excellent communication skills.
– No personal life or regard for self.

6. Digital Health Technologies: Superconvergence
into Personalized Medicine
• Wireless sensors
• Genomics
• Information systems
• Mobile connectivity
• Internet/social networking
• Computing power + data universe
Topol, E. The Creative Destruction of Medicine, 2012

7. Why is Digitized Medicine Good for Patients?
• Increased patient engagement (self-management).
• Better doctor-patient relationship.
• Improved educational resources for self-management.
• Improves caregivers’ abilities.
• Creates personalization => better outcome.
• Convergence of many technologies
(simplification, convenience).

8. Wireless Sensors
• Physiologic data derived directly from patient.
– Vital signs: heart, respiratory rate, temp, blood
pressure
– Data from implantable devices: insulin pumps,
pacemakers, defibrillators, pressure sensors in
lungs
• Medication adherence platforms
• Movement/location sensors
– ‘Alzheimer’ shoes
– Inner sole gait sensors

9. Wireless Sensors: Patient Advocacy Role
• Aging at home: decreases infection, medication errors,
death.
• Remote patient monitoring improves outcome.
• Patient engagement improves outcome.
• Constant trending data more accurate than snapshot
view.
• Involves caregivers more directly.

10. Genomics

11. Genomics
• Digitization of a person’s genetics: available
for $2000 and sent to your smart phone.
• Personalized medicine:
– patient susceptibility to specific treatments.
– Predict susceptibility to specific diseases.
– Pool data => population studies.

12. Genomics
• Challenges:
– Most genetic predispositions require
environmental influences.
– Associated counseling needed.
– Genetics may change over time.
– Risks may change over time.
– Many diseases not mapped.
– Most physicians not prepared to address.

13. Genomics: Patient Advocacy Role
• Gives patients vision of future-> personalized
life, treatment, family planning decisions.
• Crowdsourced clinical studies: ?less bias, better
compliance (23andME, PatientsLikeMe).
• More comprehensive understanding of cancer, other
complex diseases.
• Faster way to treatments of rare diseases.

14. Information Systems
• EHRs
• Patient portals (PHRs)
• HIEs
• E-prescribing
• Backbone of ACOs
• CDS tools
• Connectivity to mHealth tools

15. Information Systems: Patient Advocacy Role
• EHRs
– Decrease unnecessary tests?
– Improved outcomes?
– Decrease drug, treatment errors.
• PHRs
– Increase patient engagement
– Less mistakes-> less deaths
• E-prescribing
– Safer?
• CDS tools
– Eliminates practice variation?

16. Mobile Connectivity
• PHRs on phone
• Mobile health apps
– Mobile EHRs
– Remote patient monitoring
– Physician locators, appts
– Telemedicine tools (3G Doctor)
– Best doc, procedure, insurance pricing
– Patient education tools
– Wellness and fitness apps

17. Mobile Connectivity: Patient Advocacy Role
• Patients want mobile access
• Patients want their own data
• Caregivers with equal access
• Rapid transmission of data/communication
from physician
• Promotes active engagement with patient
portal

18. Mobile Connectivity

19. Certification Program
BLUE RIBBON PANEL
David Lee Scher, MD, Chair
Cardiologist and Mobile Health Set Standards for App Certification
Authority
Franklin A. Shaffer, EdD, RN, APP CERTIFICATION
REVIEW BOARD
FAAN
Head of the Nursing Advisory
Council
Implement Program and Oversee Reviewers
Shuvo Roy, PhD
Leading biomedical scientist and
researcher NURSE PHYSICIAN OTHER
REVIEWERS REVIEWERS PROVIDER
REVIEWERS
Review Apps
Dave deBronkart
ePatient Dave
Leading Patient Advocate
19

20. Internet/Social Networking

21. Internet/Social Networking
• Reference sites
• Source for research
• Physician/Provider ratings
• Interacting with peers –patients, physicians,
nurses, other providers
• Fundraising
• Patient-provider interactions

22. Internet/Social Networking:
Patient Advocacy Role
• Reliable , updated information (research, advocacy
resources).
• Crowdsourcing adverse events of drugs, devices.
• Patient rights/advocacy (Society for Participatory
Medicine).
• Integrates countries, cultures, and diverse healthcare
systems.

23. Computing Power and Data Universe (Big Data):
Friend or Foe?

24. Computing Power and Data Universe
• Big Data: A loosely-defined term used to describe data
sets so large and complex that they become awkward to
work with using on-hand database management tools
– EHRs
– remote monitoring
– HIEs
– Pharma/med device companies
– crowdsourcing
– clinical trials
– payers

25. Making Big Data a Patient Advocate Tool

26. Computing Power and Data Universe
• Must be filtered
• Value: Outsourced to commercial and
academic enterprises
• Requires new breed of professionals
– Board certified informatics physicians
– Chief Knowledge Officers
– Care coordinator experts in mHealth

27. Big Data: Cost Saving Opportunities
• Clinical operations
• Payments/pricing
• R&D of drugs/devices
• New business models
• Public health initiatives

28. Computing Power and Data Universe: Patient
Advocacy Role
• Personalization of care
– Crowdsourced data
– automated mining of EHR data
– Personalized prescription of mHealth technologies
• Faster path to treatment/cures

29. Crowdsourced Healthcare Studies
• Definition: “The practice of obtaining
participants, services, ideas, or content by
soliciting contributions from a large group of
people, especially via the Internet”

31. Crowdsourced Healthcare Studies
• Types
– Research-organized studies
– Patient/subject organized studies
• Genomics
• Self-tracking

33. Research-Organized Crowdsourced Studies
• PatientsLikeMe:
– Inspired by patient with ALS looking for rapid
information.
– An online community with medical condition
segmentation
– Business model: sell information to drug, device
and medical service companies and insurers.

34. PatientsLikeMe: ALS Lithium Study
Accelerated clinical discovery using self-reported patient
data collected online and a patient-matching algorithm.
Wicks P, Vaughan TE, Massagli MP, Heywood J.
Nature Biotechnology 29, 411–414 (2011) doi:10.1038/nbt.1837
• Study of effect of Lithium on progression of ALS.
• Proved to be a negative study.
• Landmark trial of crowdsourcing technique.

35. Personalized Participatory Medicine

36. #S4PM: Nothing About Us Without Us

38. The Walking Gallery

39. SUMMARY: Can Technology Become the
Ultimate Patient Advocate?
• NO! But it can be the ultimate patient
advocate assistant.
• The need for human contact in healthcare will
always exist.
• Technology can improve healthcare delivery,
outcomes, and facilitate the job of caregivers
and advocates.

40. “If you ask me a question I don’t know, I’m
not going to answer”
------Yogi Berra