Engaging Advocacy

Jack Westfall, MD, MPHChief Medical Officer, Colorado HealthOP

Director, High Plains Research Network

Patient and Clinician Engagement

• “It is inherently improbable that an academic researcher can ask a clinical question that matters to a patient.”

• “It is improbable that a family doctor or faculty member can advocate solely on our own so that it matters to our patients.”

• Or anyone else for that matter.

What’s the point? What is Advocacy

• Advocacy is just standing up for something

• Or someone

• Standing with

• To help someone

• Advocacy is what we do in the clinic and classroom.

• We advocate for our patient every time we make a call to someone on their behalf.

Patient engagement

• Why engage patients and providers in our work?

• How did I get involved in advocacy?

• How to manage advocacy and policy work?

We tried it alone…..It doesn’t work

• Science-alone advocacy does not work

• Just telling about our cool research projects does not seem to work• Policy makers don’t read medical journals.

• Payment reform may not sell when it’s just the doctors making the sale.• GME reform• Malpractice reform• ………..

• Begging for more appropriations does not work

• NAPCRG Research Policy and Advocacy Committee – about 7 years or so

• Binational, multinational

• Primary care v Family Medicine

• What is primary care?

• What policies do we want

• Who makes those policies• Elected officials, federal, state, local

• Agency leaders

• Project officers

• Our own leaders

• AAFP, CFPC

• STFM

• The Family of Family Medicine

NAPCRG

• Key Messages for Advocating the Importance of Primary Care and Primary Care Research

• They are beautiful

• So, so beautiful

• The overall health of a population is directly linked to the strength of its

primary health care system. A strong primary care system delivers higher

quality of care and better health for less cost.

• Primary care provides a “medical home” and considers the whole person, as

they exist in family, community, and population, including multiple illnesses,

preventive care, health promotion, and the integration of mind and body.

• Primary care is: • Complex and comprehensive

• Where most people first bring their symptoms and health concerns and have their first touch with the health

care system

• Where people develop healing, trusting relationships with their physician and other primary care providers

• Primary care research includes:• Translating science into the practice of medicine and caring for patients

• Understanding how to better organize health care to meet patient and population needs

• Evaluating innovations to provide the best health care to patients

• Engaging patients, communities, and practices to improve health

• The majority of health care takes place in primary care practices.

• And yet, the majority of research funding supports research of one specific

disease, organ system, cellular or chemical process – not for primary care.

• Very little is known about important topics such as how primary care services

are best organized, how to maximize and prioritize care, how to introduce and

disseminate new discoveries so they work in life, and how patients can best

decide how and when to seek care.

• Our mass of researchers and leaders and lobbyists carried these wide and far

• And the money just poured into primary care research.

We need help

• Patients

• Providers

• Community members

• Who are the “poster children” for primary care?

• Who knows what we do?

• Who benefits from what we do?

• Who are our partners?

• What’s the story?

• Who can help you?

2013 Citizen Engagement Dyads

Providers and Patients and Presenters

Ed Bujold, MD Ray HaemeKristen Dillon, MD Susan Lowe Cynthia Krueger Wolff, MD Bethene Kay Ross Tony Gerk, MD Christin Sutter Ned Norman Maret Felzien, MA Joesph Lemaster, MD, MPH Mang SonnaMarilyn Fraser, MD Ruthann Taylor Cleo Mavriplis, MD Madeleine L Champagne Ann Macauley, MD Jean LégaréAntoine Boivin, MD Jean Vocino

Jack Westfall, Linda Zittleman, LJ FagnanTom Vansaghi, Rick Glazier, Hope Wittenberg, Cheryl Levitt

Perry Dickinson, Valerie Gilchrist David Meyers, Joe Selby, Nancy Mason Maclellan

Patient and Clinician Engagement

Family Doctor - Patient

NAPCRG Patient/Provider Policy PreCon

• Pre-reading

• Saturday – all day – 8-5

• NAPCRG meeting

• Presentations, posters,

• Monday - 2 hours 1-3pm

• Follow-up

• Evaluation

• Other stuff

Family Doctor - Patient

• What is Primary Care

• What is Primary Care Research

• Personal stories about primary care

• Appreciative inquiry

• When primary care worked for you, tell that story

• Advocacy 101

• Putting it all together

• Data + story + person = advocacy

Primary Care is Associated With:In the United States

• Lower all-cause mortality;• Lower cancer, heart disease and infant mortality;• Lower incidence of low birth weight; • Longer life expectancy;• Lower stroke mortality; • Better self-rated health• Earlier detection of breast cancer, colorectal cancer, cervical

cancer, melanoma

In the United Kingdom• Better self-reported health• Less obesity• Canadian studies have

In Canada • Earlier detection of breast cancer• More recommended newborn and preventive care visits for

children• Better population health outcomes at the provincial level

Source:

Toward a Primary Care Strategy for Canada 2012

People do better with primary care.

Source: Starfield B, Shi L, Grover A, Macinko J. The Effects of Specialist Supply on Populations’ Health: Assessing the Evidence.

http://content.healthaffairs.org/cgi/content/full/hlthaff.w5.97/DC1

What’s the point?

• Advocacy is just standing up for something

• Or someone

• Standing with

• To help someone

• Advocacy is what we do in the clinic and classroom everyday.

• What is your patient/provider family medicine story?

Plenary Session AVG

a. What is primary care? 1 5 4.7

b. What is primary care research? 1 5 4.8

First Dyad Breakout 1 5 4.7

Lunch Panel Discussion

a. Nancy Mason MacLellan (CIHR)1 1 5 4.4

b. David Meyers (AHRQ) 1 5 4.8

c. Joseph Selby (PCORI) 1 5 4.8

Concurrent Advocacy Sessions

a. US - Hope Wittenberg 1 5 4.6

b. Canada – Cheryl Levitt 1 5 4.6

Putting it all together

a. Jack Westfall 1 5 4.9

Dyad Breakouts – action plans 1 5 4.4

Monday- Group Discussion and Prep 1 5 4.7

Evaluation Comments

• Too much alphabet soup• NIH, NIMH, PCORI, AHRQ, NAPCRG, STFM

• I want to be involved. Thank you

• Train more dyads and activate them.

• Continue to get input from patients• Priorities, research, dissemination

• Clear, concise messaging• With Stories

• Adopt an advocacy patient – become an advocacy dyad

Engage and get turned around

“There is nothing like looking, if you want to find something. You certainly usually find something, if you look, but it is not always quite the something you were after.”

- J.R.R. Tolkien

Patient/Provider dyads told us…..

The relationship between physician and patient is critically important

Study what works in a "good" clinic.

How to scale up to other practices (all the good stuff that works) - how to make sure that research/information on good practices is implemented in all primary care offices -not just the lucky ones.

Stories need to be tied to unifying themes.

Get big advocacy groups like AARP on board.

Target main legislators who distribute health care funding.

Study how practices "learn" new information.

Systems - how can locally derived successful care help inform other practices?

Advocacy is about Relationship

• Patient/Provider Dyad Themes

• #1 Communication (true, bi-directional communication)• Subtheme: Appropriate dissemination of new

knowledge and uptake by other providers.

• #2 - Need for relationship –• the importance of relationships,

• the right kinds of relationships

And then they got engaged

• We want patients to be part of the leadership of family medicine organizations.

• We want them to be on the NAPCRG Board

• We want to give out the “People’s Choice Award” for the research that most relates to me as a patient.

• We want to attend NAPCRG, participate in NAPCRG, inform NAPCRG.

• Yes, we’ll tell stories. But we want them to be stories about NAPCRG and us.

Other Stuff• Dyad Advocacy Efforts

• Reviewed and informed letters to funders in US and Canada

• Participated in NAPCRG Strategic Plan survey and interviews

• Dyad participated in Family Medicine Congressional Conference – April 2014

• 2 patients participated in NAPCRG Board Strategic Planning Retreat

• Reviewed, informed, and Co-PI NAPCRG PCORI proposal

• NAPCRG adding patient’s to the Board of Directors

• Challenging all the family of family medicine organizations to add patients to their Board

• Tell their stories

You can do Advocacy

• Advocacy is what we do in the clinic and classroom everyday.

And so can your patients

You Can Do It

What is patient engaged advocacy?

• What happens when a patient tells the story?• Legislators

• Funders

• Community-based organizations

• Your local community, clinic, school, worksite

• What is your story? What is your patient’s story?• Your patient/provider story

• How did primary care work for you (dyad)

• Primary care research

• The dyad together tell a story that is clinical and personal

• Mix in a little data supplied by AAFP, NAPCRG, CAFM, FMCC, etc. and you have a really powerful advocacy visit.

You and a patient go a visitin’

• Elected folks• National, state, local

• Federal Funding Agencies• HRSA, NIH, AHRQ

• Foundations• RWJ, Kellogg, etc• Local Foundation

• Colorado Health Foundation, Caring for Colorado Foundation, etc.

• Community Organizations• Clubs and Civic organizations• County Commissioners, City Council, Chamber of Commerce• Your work site

• Yuma Hospital bilingual signage

Engaging Your Patients Buffet

• Advocacy – policy

• Advocacy – local

• Patient Advisory Council for your practice

• Part of your practice-based research network

• Asking and answering questions that matter to patients

• Quality improvement

• Advocacy – clinical programs, media

What’s the point?

• Advocacy is just standing up for something

• Or someone

• Standing with

• To help someone

• Advocacy is something we can do everyday.

• You and a patient – who will you call?• Who will your tell your story to?

Advocacy does not happen alone

• NAPCRG Board of Directors

• NAPCRG Research Policy and Advocacy Committee

• Tom Vansaghi

• Hope Wittenberg

• Jessica Sand

• Jill Haught

• Kristin Robinson

• Linda Zittleman

• Maret Felzien and Ned Norman