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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, mgriskewicz@himss.org, @mgriskewicz, LinkenIn

https://www.linkedin.com/in/mary-griskewicz-

33a772a?trk=nav_responsive_tab_profile_pic

• www.tinyurl.com/Participatoryhealthcare

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