Digital Health Technology: The Ultimate Patient Advocate

David Lee Scher, MD, FACC, FHRSDLS Healthcare Consulting, LLC

Harrisburg, PA

digitalhealthconsultants.com

Arkansas HIMSS2012June 1, 2012

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

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

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.

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

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).

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

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.

Genomics

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.

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.

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.

Information Systems

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

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?

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

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

Mobile Connectivity

19

Certification Program

BLUE RIBBON PANEL

APP CERTIFICATION REVIEW BOARD

NURSE REVIEWERS

PHYSICIAN REVIEWERS

OTHER PROVIDER

REVIEWERS

Set Standards for App Certification

Implement Program and Oversee Reviewers

Review AppsDave deBronkartePatient DaveLeading Patient Advocate

Shuvo Roy, PhDLeading biomedical scientist and researcher

Franklin A. Shaffer, EdD, RN, FAANHead of the Nursing Advisory Council

David Lee Scher, MD, ChairCardiologist and Mobile Health Authority

Internet/Social Networking

Internet/Social Networking

• Reference sites• Source for research • Physician/Provider ratings• Interacting with peers –patients, physicians,

nurses, other providers• Fundraising• Patient-provider interactions

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.

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

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

Making Big Data a Patient Advocate Tool

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

Big Data: Cost Saving Opportunities

• Clinical operations• Payments/pricing• R&D of drugs/devices• New business models• Public health initiatives

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

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”

Crowdsourced Healthcare Studies

• Types– Research-organized studies– Patient/subject organized studies• Genomics• Self-tracking

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.

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.

Personalized Participatory Medicine

#S4PM: Nothing About Us Without Us

The Walking Gallery

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.

“If you ask me a question I don’t know, I’m not going to answer”

------Yogi Berra