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The “P” is for Participation, Partnering and emPowerment
Session 60, February 20, 2017
Jan Oldenburg, Principal, Participatory Health Consulting
Mary Griskewicz, Director, Strategic Sales, HIMSS North America
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Speaker Introduction
Jan Oldenburg, BA, FHIMSS
Principal
Participatory Health Consulting
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Speaker Introduction
Mary Griskewicz, MS, FHIMSS
Director, Strategic Sales, HIMSS North America
Former Senior Director, of HIMSS Health Information Systems
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Conflict of Interest
Jan Oldenburg and Mary Griskewicz
Have no real or apparent conflicts of interest to report.
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Agenda1. Welcome & Introductions
2. The value of this work
3. This is a Journey
4. Digital health capabilities
5. Satisfiers and dis-satisfiers
6. Barriers
7. Strategies
8. Voice of the Patient and Family Caregiver
9. Questions
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Learning Objectives• Learning Objective 1: Identify digital health capabilities that will best
demonstrate and incorporate participatory health frameworks
• Learning Objective 2: Analyze key satisfiers and dis-satisfiers for patients and caregivers in the area of participatory healthcare
• Learning Objective 3: Appraise attitudinal and cultural barriers to participatory healthcare in your organization
• Learning Objective 4: Differentiate strategies for building participation across process, policy, systems, and attitudes
• Learning Objective 5: Identify patient-generated and caregiver-based data to be incorporated when welcoming patient, consumer and caregiver participation in your organization
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Focused on Patient Engagement portion of STEPS framework
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This is a Journey
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Participation
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What is participatory healthcare?• Egalitarian:
– Patients and caregivers are viewed and included as partners both in their own care and in designing the system
– Attitudes and behaviors of health system, physicians, employees reflect belief in equality of patients and caregivers
• Empowering:
– The system is designed around patients and caregivers
– Information and tools are provided to enable patients to understand and participate in shared decision making
• Easy:– Everything is focused on reducing friction for patients and caregivers
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What does “Participatory Health” really mean? Quiz: Polling
– Have a patient/caregiver council with a real voice in the system?
– Patients/caregivers included on system, process, and policy design teams?
– Family caregivers listed in your medical record?
– Clinicians are trained in shared decision-making?
– Patient portal has been launched?
– Access to clinical notes (ie, OpenNotes) included on your patient portal?
– Patients can download all of the data from your portal?
– APIs have been opened to enable end-user innovation with the information on your portal?
– Patient generated health data is included in your EHR?
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Shared Decision Making
Source: Altarum Institute Survey of. Consumer Health Care Opinions. Spring 2014
24%
38%
30%
6%
1%0%
5%
10%
15%
20%
25%
30%
35%
40%
To be completely incharge of my
decisions
To make the finaldecision with someinput from doctorsand other experts
To make a jointdecision with equal
input from my doctor
My doctor to makethe decisions with
input from me
The doctor to becompletely in charge
of treatmentdecisions
9 in 10 U.S. Adults want to share in health decision making, Spring 2014
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Most people want to be more involved in health decisions than they are
75%
57%
Desire vs reality of involvement in medical decisions
Want to be very involved
Felt very involved
40% 40%
20%
0%
5%
10%
15%
20%
25%
30%
35%
40%
45%
Made majorhealth decision
myself
Made majorhealth decisionin partnership
with my provider
My doctor madethe major health
decision
Involvement in major decisions
Source: Engaging California patients in major medical decisions
http://www.blueshieldcafoundation.org/sites/default/files/publications/downloadable/BCSF_engaging_patients.pdf
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2016 Accenture Study finds Patient access to portal data is rising
27%
45%
0
0.05
0.1
0.15
0.2
0.25
0.3
0.35
0.4
0.45
0.5
2014 2016
% of US Consumers who access their data on a patient portal
Source: 2016 Accenture Consumer Digital Health Survey, “Patients want a heavy dose of digital,” https://www.accenture.com/t20160629T045303__w__/us-en/_acnmedia/PDF-6/Accenture-Patients-Want-A-Heavy-Dose-of-Digital-Infographic.pdf#zoom=50
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2016 Accenture Study finds US Consumers are more aware of available capabilities
24%
15%
24%
13%
16%
15%
18%
44%
33%
48%
29%
37%
36%
35%
0% 10% 20% 30% 40% 50% 60%
Prescription medication history
Physician notes from visits/condition
Lab work and blood test results
X-rays or nuclear imaging results
Immunization status
Personal profile information
Billing information
Source: 2016 Accenture Consumer Digital Health Survey, “Patients want a heavy dose of digital,” https://www.accenture.com/t20160629T045303__w__/us-en/_acnmedia/PDF-6/Accenture-Patients-Want-A-Heavy-Dose-of-Digital-Infographic.pdf#zoom=50
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US Consumers want wearables to support health
26%
29%
32%
46%
67%
75%
77%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90%
Plug into social media
Access to entertainment
Control home appliances
Find retail deals
Eat better
Collect and track medical information
Exercise smarter
Health tops list of information US consumers want from wearables
Source: BI Intelligence via PWC
v http://www.businessinsider.com/the-wearables-in-the-healthcare-sector-report-how-emerging-consumer-and-professional-
healthcare-trends-are-driving-interest-in-wearables-2015-10
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Value Patient Engagement MattersMost engaged Patients have healthier BMIs, take meds, ask about cost, use tools
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Participatory Health intersects several healthcare trends
Shared-decision making
Patient-centered care
Personalized medicine
Digital health technologies
Personal health engagement
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Other consumer trends impact consumer expectations
Banking
Exercise
Smartphones
News Entertainment
Shopping
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The Disconnected Healthcare ecosystem
Clinic
Clinic
Clinic
Clinic
Rehab
ClinicSNF
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The Healthcare ecosystem failed them
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Partnering
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Enterprise framework for consumer engagement
Source: Adapted from Sample Consumer Engagement Framework American Institutes for Research
http://forces4quality.org/print-preview/6771.html
Continuum of Patient/Family Engagement
Levels of engagement Consultation InvolvementPartnership and shared
leadership
Direct carePatients receive information
and instructions about a
condition or diagnosis
Patients preferences are
discussed in treatment
planning
Patient makes treatment
decisions taking into account
personal preferences,
medical evidence, clinical
advice
Organizational design
and governance
Organization surveys patients
about their care experiences
and goals
Organization involves
patients as advisors or
advisory council members
Patients co-lead
organizational safety and
quality improvement
committees
Policy-making
Organization conducts focus
groups with patients to ask
opinions about healthcare
issues
Patients' recommendations
about research priorities are
used to make funding
decisions
Patients have equal
representation on committees
that make decisions about
resource allocations
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Barriers to enterprise engagement
• Existing attitudes and beliefs:
– Patients
– Physicians and staff
• Insufficient or weak leadership
• Belief that consumers don’t really want things to be different
• This seems like a lower priority than other required changes
• No perceived ROI
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Implications for enterprise engagement
• Listening is not enough
• Patients and caregivers expect more than lip service:
– A seat at the table
– The opportunity to impact budgets, strategy, policy, process
– Real change, indicated by changes to their experience
• Partnership requires leadership:
– Attitude and culture change (perhaps even more than systems change)
– Training and continuing education; peer mentorship
– Follow-through at all levels
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Where to start with enterprise engagement?
1. Establish a patient and caregiver advisory board
2. Train physicians and staff on shared decision-making principles
3. Bring patients and caregivers into process or technology/selection design—even at the departmental level
4. Celebrate successes with patient involvement
5. Tell patient and caregiver stories—and not just the good ones
– Use them to explore how things could be improved
– Follow up on negative evaluations
6. Above all: lead from where you stand; lead by example
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Empowerment
Patient Engagement Is The Blockbuster Drug Of The Century, Leonard Kish, Forbes, 2012
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Patients need personalized engagement strategies
Resistant Passive Informed Empowered Self-
Actualized
Att
itu
de
to
ward
cli
nic
ian
s
MotivationExtrinsic Intrinsic
Partners
Advisors
Authorities
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Framework for individual engagement
Extrinsic Intrinsic
Community
Individual
Axis of
motivation
Axis of
involvement
Participation
motivated by team
rewards
Participation
motivated by social
good
Participation
motivated by self
improvement
Participation
motivated by
rewards for
individual
accomplishments
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Where to start with patient-focused technology
1. Make sure your portal is more than a “check the box” offering:
– Ensure everyone has a role
– Reinforce how the portal can help at every interaction
2. Keep improving your capabilities:
– Survey patients about what they want to see next (minimal)
– Include them in the actual prioritization sessions
3. Consider apps, text messaging, as well as web solutions to reach all audiences:
– Text messaging can be very effective for reminders
– Different solutions fit different situations, needs
– Try apps for doctors to ”prescribe” for behavior change
4. Build process, workflow, and policies around technology to ensure you don’t undermine it
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Directions for technology choices
• Offer information, engagement at different levels
• One solution does not meet all
• Invest in analytics to personalize engagement offerings:
– Not all diabetics are motivated by the same things
– Health and demographic information is not enough to determine engagement patterns
• Provide options:
– Range of technology
– Options for mix of interpersonal/technology approaches
– Sophisticated choices for sophisticated consumers
• Partner with consumers throughout development/selection process
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Directions for technology choices
• Use technologies that are already working, perhaps in other business verticals
• Benchmark others
• Patient financial health technologies should also be considered
• Partner with your technology companies
• Education is required for clinicians, ancillary providers, patients and family members
• Usability is key-–if it isn’t easy, it won’t get used
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Industry Examples Improved Symptom Awareness at Tucson Medical Center | 05/01/2015
• Tucson Medical Center has equipped each patient room with a computer allowing providers to easily share information with their patients. Images from scans help transform medical terminology into understandable language for patients and help improve patient knowledge about conditions and symptoms. Educating patients is important if health outcomes are truly to be achieved outside of medical facilities.
• Citation: HIMSS. (2012). Tucson Medical Center. http://www.himssanalytics.org/emram/stage7caseStudyTMC.aspx. Accessed June 18,
Consumer Engagement at Yale New Have Health System, | 10/4/16
• The Humm app is a product that originated in the restaurant industry. Leveraging the technology to get real-time feedback from our patients and families so that they could intervene in real time, rather than trying to respond to month-old data through traditional post-discharge surveys.Analytics around Humm have been key, along with the ability to present that visibly on the patient care units as our nurses are doing their hourly rounds and as our executives are doing their rounds.
• So this is one area where I think the tool was important and the technology was important, but the culture around seeing and responding to the data, I think, was key.
• Citation: HealthLink Advisors, Accessed January, 7 2017 http://healthsystemcio.com/2016/10/04/lisa-stump-svp-interim-cio-yale-new-haven-health-system-chapter-2/
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Be Effective
“Effective patient engagement technology is not about what people should do, but how to make it easier to do the right thing”
Source: HIMSS, The State of Patient Engagement in Health IT, 2014
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The “P” is for Participation, Partnering and emPowerment• Participation: bring patients and caregivers into your design
process; give them a seat at the table where critical decisions are makde
• Partnering: train both clinicians and patients on what it means to be a partner in healthcare decisions, with a focus on shared decision-making and access to clinical data
• emPowerment: focus on shifting attitudes and culture toward empowering consumers and patients in decisions, information to make decisions, overall approach and culture
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HIMSS Patient Engagement STEPS framework
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Your Journey Continues
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Questions
• Jan Oldenburg, @janoldenburg, add LinkedIn address
• Mary Griskewicz, [email protected], @mgriskewicz, LinkenIn
https://www.linkedin.com/in/mary-griskewicz-
33a772a?trk=nav_responsive_tab_profile_pic
• www.tinyurl.com/Participatoryhealthcare
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