How Hospitals can Engage Patients as Partners through PFACs and a Health Information Sharing

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Beryl Institute Patient Experience ConferenceApril 4th, 2019

Laura EldonNew York State Health Foundation Program Officer

Presentation Overview

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• Overview of the New York State Health Foundation’s (NYSHealth) Empowering Health Care Consumers program

• Landscape study on the prevalence and role of Patient and Family Advisory Councils (PFACs) in New York State

• Lessons learned from a Health Information Sharing Campaign—GetMyHealthData

INSTITUTE FOR PATIENT- ANDFAMILY-CENTERED CARE

Overview of NYSHealth

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• We’re a private foundation dedicated to improving the health of all New Yorkers across the state, especially the most vulnerable

• We do grantmaking across four program areas:

1. Empowering Health Care Consumers2. Building Healthy Communities3. Veterans’ Health4. Special Projects Fund

Empowering Health Care Consumers

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To ensure that all New Yorkers are empowered healthcare consumers, we

• Promote Information Transparency: provide consumers with information on price, quality, and patient experience so that they can make informed decisions about their own health and healthcare.

• Engage Patients as Partners: support consumers to have meaningful roles as partners in their own health care and in health policy decision-making.

Promote Information Transparency

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• Helping healthcare stakeholders understand what consumers want through a statewide survey on price transparency. • Encouraging the health care system’s use of patient

experience and user-generated ratings such as Yelp.• Supporting tools for consumers to make health care

decisions related to pregnancy, hospitals and doctors, and health insurance plan selection. • Providing a better understanding of quality measures that

matter to consumers.• Investing in initiatives that support patient-centric

information sharing and that “Connect Consumers to Information.”

Engage Patients as Partners

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• Promoting initiatives that give patients access to their health care visit notes.• Piloting an innovative “How’s My Health” patient

dashboard.• Supporting patient-centric discharge planning to post-

acute care settings. • Investing in patient-driven and defined healthcare

innovation. • Creating a “We the Patient” digital platform to organize,

train, and deploy patient advocates.• Examined the landscape and role of Patient and Family

Advocate Councils in New York State.

NYS PFAC Study:Key Findings and Implications

Deborah DokkenCoordinator, Patient and Family PartnershipsInstitute for Patient- and Family-Centered Care (IPFCC)ddokken@ipfcc.org

About the Study

u Funded by NYSHealth Foundation

u Conducted by IPFCC

u Project looked at:Prevalence of hospital-based PFACs in NY

Characteristics of NY hospital PFACsRelationship between PFAC characteristics, selected safety and experience of care outcomes

Best practices for “High Performing” PFACs

INSTITUTE FOR PATIENT- ANDFAMILY-CENTERED CARE

Sharing Experience and Expertise

What is your experience?

With PFACs?

With PFAs?

Project Activities

u Online survey of acute care hospitals across NYSurvey emailed to 170 acute care hospitalsValid responses from 110 hospitals

u Follow-up interviews and site visits with selected survey respondents

u Key informant interviews with individuals in other states that have initiatives to increase adoption of PFACs

Online Survey

u Developed based on existing instruments, review by Project Advisory Committee

u Piloted with patient experience staff and PFAsu 9 domains asking about PFAC best practices related to:

PFAC structurePFAC operational proceduresPFAC membershipMember supportRecruitment and selectionOrientation and educationServing on committeesReporting and evaluationPFAC activities

Survey Results: PFAC Prevalence

Current PFAC 59.1%

PFAC in development 12.4%

No PFAC 28.5%

Hospitals with PFACs in development more likely to be CAHs, hospitals in rural counties.

Survey Results: PFAC Characteristics

u PFAC best practices followed by over 75% of hospitals:PFAC has a charterPFAC has a staff championPFAC has a staff liaisonPFAC provides annual report to BoardOutcomes of PFAC activities are reported to hospital leadershipAt least 2 PFAs on each committee with PFA representation

Survey Results: PFAC Characteristics

u PFAC best practices followed by fewer than 25% of hospitals:

PFAC has defined place in hospital organizational structurePFAC meetings have an agenda to guide meetings, meeting minutes distributed afterPFAC provides formal orientation for membersPFAC documents their activitiesOutcomes of PFAC activities reported to BoardAccommodations provided for PFAC members (transportation, child care)

Survey Results: Other Findings

u Over 1/3 of hospitals have PFACs where PFAs make up fewer than 50% of the members

u Only half of PFACs meet at least 10 times per year

u Over 3/4 of hospitals with PFACs provide PFAs with opportunity to serve as e-advisors

Sharing Experience and Expertise

How would you define“High Performing”

PFACs?

What characteristics would they have?

Survey Results: PFAC Performance

u To identify High Performing PFACsNine indices created (one for each survey domain)Identified indices most strongly related to measure of influence (how much PFAC influenced hospital leadership, policies, operations)

High Performing PFACs = those that scored in the top 50% of orientation, committee, AND evaluation indices29% of hospitals with PFACs had High Performing PFACs

PFAC Performance and HCAHPS

PFAC Performance and CMS Safety Metrics

Facilitators of High Performing PFACs

u Leadership buy-inu Staff and clinician buy-in and participationu Connection of PFAC work to broader organizational

prioritiesu Realistic expectations and resiliencyu Presence of PFCC / PFE culture

PFAC Best Practices

Accessing the PFAC Report

http://www.ipfcc.org/bestpractices/NYSHF_2018_PFAC_Online_v3.pdf

For more information:Deborah DokkenIPFCC, Coordinator, Patient and Family Partnershipsddokken@ipfcc.org

How Hospitals Can Engage Patients as Partners

Beryl Institute Patient Experience Conference April 04, 2019

About us

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4 The National Partnership for Women & Families is a nonprofit, nonpartisan

advocacy group dedicated to enhancing

women’s equity and economic security.

4 GetMyHealthData is a project of the

National Partnership committed to helping

patients & families access and use their

health information.

4 With funding from NYS Health, we

supported providers in New York to improve

information sharing in person- ways.

Consumers & online access

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53% accessed at least once

4 In 2017, half of Americans reported that they had been offered access to an online medical record by a health care provider or insurer.

SOURCE: HINTS 5, Cycle 1,

Everyone has a story

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What’s your experience with: 4Patient portals?

4 The good4 The bad4 The ugly

4Clinical progress notes (AKA “Open Notes”)?4 Not to be confused with the after visit

summary…

4 The impetus: New York health system implemented a “shared notes” pilot in one department with plans to: 4 Turn on the notes sharing function system-wide4 Eventually transition to full “Open Notes”

(default note-sharing) 4 The sticking point: Clinicians were not convinced

that notes are helpful to people. 4 The partnership strategy: Ask your patients!

4 Capture information about patient and caregiver experiences to demonstrate the value proposition and inform future efforts.

Opening up clinical notes

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4 Patient experience survey ultimately administered at two health systems: 4 System 1: Three hospitals, offered in English and Spanish (119 responses)4 System 2: 1 hospital, English only (1,021 responses)

4 Across the board, respondents experienced positive effects reading clinical notes. 4 Improved patients' relationship with and increased trust in their provider

4 Reading providers’ notes online prompted patients to take action. 4 Approximately 95% of respondents took at least one action as a result of reading their notes

4 Respondents were very likely to recommend reading notes to friends and family.

4 Providers’ notes were easy to understand.

Learning from patients’ experience

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Patients took action after reading their notes

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Note: respondents could select multiple answers

4 “The notes online makes it so easy to find out what you need to know.”

4 “Reading the notes by my NP or Dr help me to better understand my visit and gives me comfort in knowing they listened, and I truly matter.”

4 “I wish all of my doctors would do this. I always wondered what was put in the notes and it made me shy and apprehensive to really talk during appointments.”

4 “Being able to read my doctor's notes, especially before my next appointment, helps me to organize my thoughts at home so I can write down the questions I may have and often forget to ask.”

4 “I think reading through the notes mostly helpful for understanding the most important parts of what your doctor told you in the visit...It's also been helpful on several occasions for correcting miscommunications.”

In their own words

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Spanish speakers and Open Notes

4 Respondents who completed the survey in Spanish were more likely to:

4 Take the survey on a smartphone (88%). 4 Use a phone to access their patient portal

(76%).4 Look up more information online as a

result of reading their notes.4 Rate understanding notes as more difficult.

4 Respondents selected a Net Promoter Score (NPS) that was, on average, 7 points higher than English-speaking respondents.

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“Espero que el serviciocontinúe mejorando para el bienestar de la comunidad,

muchas gracias.”[I hope the service continues to improve for the welfare of the

community, thank you very much.]

“La información es oportuna.”

[The information istimely.]

More than the story: suggestions for improvement

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For Open Notes: 4 Text message notifications when new notes are available4 “Quizás por mensaje de texto.” [Maybe by text message.]4 “Better lay-person terms would be helpful and consistent usage of notes.”

For Patient Portals:

4 Non-English language translation options

4 Downloadable medication lists

4 “[The portal] is not very intuitively laid out. Improve the interface for both laptop and also mobile device and tablets. You need to redesign the layout for ease of navigation especially for mobile devices which people use given their busy schedule.”

Tips & Takeaways

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4 Recognize the need for human connection4 To answer questions4 To fix technology glitches, problem-solve

4 Set appropriate expectations4 Be clear about what information will not be available (i.e., sensitive test results,

information from other locations).

4 View requests / questions as a sign of engagement4 An invitation to longer conversation

4 Develop multi-faceted education and outreach4 Everyone should champion information sharing4 Bring together different teams, levels

4 Always include patients & families!

For more information

Find us:

www.NationalPartnership.orgwww.GetMyHealthData.org

Follow us:

www.facebook.com/nationalpartnershipwww.twitter.com/npwf

Contact me:Erin Mackay Associate Director, Health IT Policy & Programsemackay@nationalpartnership.org

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