ACCELERATING PRIMARY CARE Edmonton, Alberta Barbara Balik, EdD, MS, RN November 29, 2016 Barbara@AefinaPartners.com

Faculty/Presenter Disclosure • Faculty: Barbara Balik, EdD, RN

• Relationships that may introduce potential bias

and/or conflict of interest: • Speaker fees: Accelerating Primary Care Conference

Disclosure of Commercial Support • This program has received financial support from the

organizing committee of the Accelerating Primary Care Conference.

• This program has received NO COMMERCIAL in-kind support.

Mitigating Potential Bias • The organizing committee has established the objectives of

this program and has reviewed the presentation materials to ensure they are evidence-based.

What We Will Talk About • Integrate patient perspectives into service delivery systems and processes through three themes: • Our patients: ways to include the citizen voice and perspective

into program design and governance structures. • Our partners: gaining tips for cross-discipline, cross-institutional

work, or partnerships with community organizations. • Our people: focusing on the social determinants of health and a

broader definition of patient (person) to increase the effectiveness of person-provider interventions.

• What, Why, How • Discover the opportunities, challenges and lessons-learned from

the experiences of others using a co-design method and the positive impacts on patients, providers and outcomes.

• Identify tactics to foster mutually beneficial partnerships through incorporating the citizen voice into care and program design

Remarkable!

What is Co-design?

From – To

– from –

RANDOM ACTS OF GOODNESS

– to –

AN INTEGRATED SYSTEM

What Patients and Families Want “What patients want is not rocket science, which is really unfortunate because if it were rocket science, we would be doing it. We are great at rocket science. We love rocket science. What we’re not good at are the things that are so simple and basic that we overlook them.” —Laura Gilpin, Griffin Hospital

What Patients and Families Want

• Patient- and Family-Centered – no helplessness for those served or serving

• Safe – no needless harm or deaths • Effective – no needless pain or suffering • Timely – no unwanted waiting • Efficient – no waste • Equitable – for all

Barbara Balik - Modified from IHI

What Patients and Families Want Dignity and respect: listen and honor patient,

family, and community members perspectives and choices

Information sharing: transparent – complete and unbiased information is shared in ways that are affirming and useful (and practitioners strive to hear and use the information patients have)

Co-Creation and Participation: In care, systems design, and decision-making

Collaboration: In care; design, improvement and evaluation; policy development

• Barbara Balik; Modified from: Institute for Patient-and Family-Centered Care • http://www.ipfcc.org/

Architects and Designers

To be truly patient centered, healthcare providers must partner with patients and families to see what the experience is like through their eyes . . . ◦Patients and families are architects and designers of an effective healthcare system

• Picker Institute – Always Events Healthcare Solutions

Changing the Way We Think About Health and Healthcare

What’s the Matter?

What matters to you?

King’s Fund – Experience Based Co-design

An approach that enables staff and patients to co-design services together in partnership.

• EBCD involves gathering experiences from patients and staff

• Through in-depth interviewing, observations and group discussions, identifying key touch points (emotionally significant points) and positive or negative feelings as a base for design

• A partnership between patients, staff, and carers • Storytelling approach to identify touch points • With an emphasis on the co-design of services • Systematic evaluation of improvements and benefits

Two Questions • How do you Define Co-design

• Talk with your colleagues about how you do or could define co-design

• Why would you be interested in co-design

• What values do you hold dear that co-design helps to meet?

Short Answer

“Nothing about me without me” And

“If you know, then I know” (Transparency)

And

At the table

Co Design = Partners in Care

Why Co-design? So What?

The system we design

“Every system is perfectly designed to produce the results it gets.”

Dr. Paul Batalden

So – If we want to change the results –

change the system

Why Co-design? So What?

• Better Outcomes • Improvements in patient safety and quality • Better patient experiences • Increased healthcare professional meaning at work and retention

• Lower healthcare costs

• HRET/AHA; Betty and Gordon Moore foundation

Why – What the Evidence Tells Us • Engaged patients have fewer adverse events – most hospitalized patients participated in some aspects of their care. Participation was strongly associated with favorable judgments about hospital quality and reduced the risk of experiencing an adverse event.

• Weingart S, et al. Hospitalized patients’ participation and its impact on quality of care and patient safety. International Journal for Quality in Health Care 2011; pp. 1–9 10.

Why – What the Evidence Tells Us • Across countries, engaged patients reported fewer medical errors, higher care ratings, and more positive views of the health system as a whole

• Osborn R, Squires D. International perspectives on patient engagement: Results from the 2011 Commonwealth Fund Survey. Journal of Ambulatory Care Management, April/June 2012 35(2):118–28. Access to full article: http://journals.lww.com/ambulatorycaremanagement/Abstract/2012/04000/

Why Partner with Patients and Families?

• Healthcare significantly lags • When we fail to partner with patients, families or community members we are at high risk of: • Professionally or organizationally centered • Over-designed and wasteful

• We find out what really matters • Better, safer, simpler outcomes

• Patients better equipped to self-manage care • Consumer Voice Energy for change

Better Together

Canadian Foundation for Health Improvement

Quadruple Aim – Requires Co-design

• CARE BETTER THAN WE'VE EVER SEEN… • HEALTH BETTER THAN WE'VE EVER KNOWN...

• COST WE CAN ALL AFFORD... • WITH JOY AND MEANING IN WORK • FOR EVERY PERSON, EVERY TIME

Modified from IHI Leadership Alliance, 2015

*Bodenheimer, T. & Sinsky, C. From Triple Aim to Quadruple Aim: Care of the Patient Requires Care of the Provider. Annals of Family Med, V12, 6, Nov/Dec 2014

How Co-design - Challenges

Recognize Current State • Large barrier to partnerships and engagement

• We already think we are doing it!

• Deeply embedded belief (hubris?) that we – within healthcare – are the experts vs. merged expertise: • People are experts in their own health and lived experience • Healthcare professionals as experts in content

• Pervasive systems that reinforce those beliefs • Dismissive treatment of patients • Systemic disrespect – waiting; wasteful systems for

everyone*

*Lucian L. Leape, MD, Miles F. Shore, MD, Jules L. Dienstag, MD, Robert J. Mayer, MD, Susan Edgman-Levitan, PA, Gregg S. Meyer,

MD, MSc, and Gerald B. Healy, MD. A Culture of Respect, Part 1: The Nature and Causes of Disrespectful Behavior by Physicians. Acad Med. 2012;87:845–852. A Culture of Respect, Part 2: The Nature and Causes of Disrespectful Behavior by Physicians. Acad Med. 2012;87:853–858.

This? Or This?

Doing To – When: • We say – you do: schedules; visiting hours • We waste your time – come to the clinic and wait • We assume we know what the community needs • Information is not shared or understandable • Professionals often lack partnership skills • We determine if you are compliant • There is helplessness – when the patient/family say:

• I don’t know what is the plan of care or what happens next • I don’t know who is in charge of my care • I don’t feel like you know me

Barbara Balik

Doing For – When: • We keep the patient or community member in mind when designing or improving programs – then ask • We design the teams to help you – without you • We manage your expectations about waiting, what healthcare can do, or what the community needs • Early but limited use of health literacy • We teach you – lots & lots & lots • We are beginning to get it about cross-continuum but don’t know much about the white spaces • We assume we know everything about health and healthcare Barbara Balik

Doing With – When: • “Nothing About Me Without Me” • “At the table” – Patient/family/community are essential team members to design and improve programs that follow the patient journey • At the table – Understanding ‘What Matters to You’ • Full transparency – “If you know – I know” • All key decisions are mutual – including who is on my team • All staff are viewed as caregivers and are skilled in respectful communication and teamwork • Health Literacy is everywhere in patient care • Senior leaders model that patient’s safety and community well-being guide all decisions • Staff, providers, leaders are recruited for values first, then talent

Activity: To-For-With Assessment Patient and Family

Doing To – Patients and Families

Doing For – Patients and Families

Doing With – Patients and Families

1. Individually – Complete 1-2 examples in each category 2. Review with 1-2 colleagues 3. What do your lists tell you? What gets in the way of doing with?

Barbara Balik Barbara@AefinaPartners.com

How Co-design – Lessons Learned

How Co-design – Lessons Learned • Purpose – Your Personal Why

• Why are you interested in co-design?

• Start small – think big! • Celebrate the small wins • Get partners – get help • Measures of progress – simple and real time

• Stories are measures too

• Think levels • Actions at different levels

Partnerships • Patients, families, their representatives, and health professionals working in active partnership at various levels across the health care system • Direct care • Site, program or organizational design and governance

• Policy making—to improve health and health care

• K. Carman et al, Patient and family engagement: A framework for understanding the elements and developing interventions and policies. Health Affairs 32, No. 2(2013): 223-231.

How it Fits Together

System/ Policy

Clinic

Care

Foundation

Culture that: Seeks health

Values

partnerships

Nurtures autonomy & self

management

Always improving

Foundation Develop a Culture that: • Seeks health

• Values partnerships

• Nurtures autonomy & self management

• Always improves

How it Fits Together

System/ Policy

Clinic

Care

Foundation

Ask: What Matters to

you?

Health Literacy

Open Notes – Access to EHR

Shared

Decision-Making

How? At the Care Level • Ask: (Options)

• What matters to you today about your health? • What is top of your list today? • What are you most worried about?

• Health Literacy = mutual understanding • Open Notes – access to EHR • Shared decision-making

• Setting mutual goals • Medication management – what and why • Encourage asking questions of the clinical team

How? At the Care Level

• Do you already ask “What Matters?” • Practice at table

• One is the patient • One is the provider

• Talk about what works and does not • Make the question your own – how would you ask “What Matters?”

How it Fits Together

System/ Policy

Clinic

Care

Foundation

Health Literacy

Co-design teams

Access

Continuity of

Care

How? At the Clinic Level • Health Literacy

• Co-design teams

• Access

• Continuity of Care

Health Literacy = Mutual Understanding

• Seeking medical care, taking medications correctly, and following prescribed treatments requires that people understand how to access and apply health information

• It also requires health care practitioners listen to and honor patient and family perspectives and choices.

• Patient and family knowledge, values, beliefs and cultural backgrounds are incorporated into the planning and delivery of care. IPFCC.org

Health Literacy • Primary care practices should ensure that systems are in place to promote better understanding for all patients, not just those you think need extra assistance

• Improving patient understanding is beneficial for the patient and health care provider

• From: AHRQ Health Literacy Universal Precautions Toolkit: http://www.ahrq.gov/professionals/quality-

patient-safety/quality-resources/tools/literacy-toolkit/index.html

How – Health Literacy in Primary Care

1. Create a respectful patient centered environment.

2. Improve interpersonal communication with patients.

3. Create and use patient-friendly written materials.

Create a respectful patient centered environment

1. Create a respectful patient centered environment Environments where patients feel comfortable: • Saying : I don’t understand” • Asking questions • Talking openly about their health and concerns

Remember: asking healthcare practitioners questions can be intimidating: • Fear of sounding stupid • Fear of being “difficult” • Fear of upsetting or bothering

1. Create a respectful patient centered environment (cont.)

• Attitude of helpfulness, caring, and respect by all staff

• Easy-to-follow instructions for appointments, check-in, referrals, and tests

• Simple telephone and clinic processes • Assistance provided confidentially • All staff skilled in their role in enhancing understanding

What is it like in your clinic? Direct Observations – “Be a Patient” • Are check-in personnel welcoming? • First impressions? • Non-verbal staff communication? • What forms will you be given? • Will you be offered confidential assistance? • Are you given easy-to-follow instructions?

Improve interpersonal communication with patients

2. Improve interpersonal communication with patients Plain “living-room” language Slow down Break it down, short statements Organize into 2-3 concepts then check for

understanding Chunk and check

Teach-back

Plain Language

Clinical Language Plain Language

Benign

Contraception

Hypertension

Oral

Anti-inflammatory

Incontinence

Abdomen

Twice daily

Others?

Chunk and Check • The patient is newly diagnosed with diabetes • What are the 2-3 main concepts they need to know? 1.X 2.X 3.X

• Does everyone in the clinic use the same main concepts?

Teach Back • Respectfully ask patients to demonstrate understanding, using

their own words: • “What will you tell your husband about what to do when

Erin’s asthma gets worse?”

• “I want to be sure I explained everything clearly, so could you say it back to me so I can see if I did?”

• “We’ve gone over a lot of information; can we talk about things you might do to get more exercise in your day? How might you make it work at home? What might get in the way?”

• www.teachbacktraining.com

Teach Back “Let’s look at your medicine bottle. I want to make sure I’ve covered how to take medications. Can you please show me how many pills you will take in 1 day?”

• Do not ask: • “Do you understand?”

• “Do you have any questions?”

Create and use patient-friendly written materials

3. Create and use patient-friendly written materials • Chunk – key content

• “Just because you know it doesn't’t mean they need to hear it” • Use Chunk and Check from step 2

• Readability • http://www.readabilityformulas.com/free-readability-formula-tests.php

• Plain language • http://www.nih.gov/clearcommunication/plainlanguage/gettingstarted/index.htm

• Patients co-develop and review • The Red Pencil exercise

Co-Design Teams Patient/Family Partners on co-design teams

• Where can you start now? • Ask one now! • Think of a patient who might be a great partner

• Where are you planning to improve or design • How can you get help from a patient partner?

How? Organizational or Policy Level

How it Fits Together

System/ Policy

Clinic

Care

Foundation

Network board members

Province-wide

co-design

All improvement and design committees

How? At the System/Policy Level • Network board members

• Province-wide co-design

• All improvement and design committees

• Others?

What do you need? System/Policy

• What can they provide to support you?

Alone we can do so little; together we can do so much Helen Keller

CNN Photoshttp://www.cnn.com/2015/09/03/world/gallery/europes-refugee-crisis/

RESOURCES BARBARA@AEFINAPARTNERS.COM

Shared Decision-Making • Mayo Shared Decision Making

• Patients and clinicians have different expertise when it comes to making consequential clinical decisions.

• While clinicians know information about the disease, tests and treatments, the patient knows information about their body, their circumstances, their goals for life and healthcare.

• It is only collaborating on making decisions together that the ideal of evidence-based medicine can come true

http://shareddecisions.mayoclinic.org/

Resources • http://www.ama-assn.org/ama/pub/about-ama/ama-foundation/our-programs/public-health/health-

literacy-program/health-literacy-video.page

• Selection of video clips on You Tube: • http://search.mywebsearch.com/mywebsearch/video.jhtml?searchfor=ama+teachback+video&t

s=1377220478005&p2=^ZO^xdm003^YY^us&n=77fce5de&ss=sub&st=hp&ptb=38AD0F95-BD15-4315-9787-E5E655D24D1F&tpr=hpsb&si=CLnC6pWTg7gCFbBFMgodkk8AMg&vid=7MoQTC-mxxM

• www.teachbacktraining.com

• It is a free, interactive training module for building competence in use of teach-back for three settings of care: hospitals, home care and office practices.

• The interactive modules have been very effective in helping providers learn competent use of the technique. There is a primary care physician video testimonial about his use of the tool.

• AHRQ Universal Precautions Toolkit

• http://www.ahrq.gov/professionals/quality-patient-safety/quality-resources/tools/literacy-toolkit/index.html

• IOM Ten Attributes of Health Literate Organizations, June 2012

• http://www.iom.edu/Global/Perspectives/2012/HealthLitAttributes.aspx

Resources • AHRQ

• http://effectivehealthcare.ahrq.gov/index.cfm/tools-and-resources/patient-decision-aids/

• http://www.ccmemedicare.org/default.aspx?pn=PFECPatientFamilyResources

• Society for Participatory Medicine • http://participatorymedicine.org/

• Let Patients Help. TED Talk. • http://www.youtube.com/watch?v=2vejkD0Rl3o

• Patient-Centered Reported Outcomes Research Institute • http://www.pcori.org/

Resources • Center for Shared Decision Making, Dartmouth-Hitchcock

• http://patients.dartmouth-hitchcock.org/shared_decision_making/about_shared_decision_making.html

• Informed Medical Decisions Foundation • http://www.informedmedicaldecisions.org/

• Mayo Clinic Shared Decision Making National Resource Center • http://shareddecisions.mayoclinic.org/

• Ottawa Research Institute • http://decisionaid.ohri.ca/implement.html

• IOM, Partnering with Patient to Drive Shared Decisions, Better Value, and Care Improvement, August 2013 • http://www.iom.edu/Reports/2013/Partnering-with-Patients-to-Drive-

Shared-Decisions-Better-Value-and-Care-Improvement.aspx

Resources From the Centre for Collaboration, Motivation & Innovation www.Centrecmi.com

• Motivational Interviewing for Busy Clinicians:

• A physician shares a personal story about using motivational interventions to work with a patient in her practice.

• Addresses the ‘too much time’ issue – 15 years of conversations vs. 15 mn of Motivational Interviewing

• http://www.youtube.com/watch?v=0z65EppMfHk&feature=em-share_video_user