Improving Pediatric Healthcare Through Family and Professional Collaborations

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Improving Pediatric Healthcare Through Family and
Professional Collaborations

• Christy Blakely
• Executive Director, Family Voices, Colorado
• Doris Hanna, RN, CPNP, ScD
• Executive Program Director, N ICHQ
• Family Voices Conference
• May 4, 2009

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Objectives

• Describe how to effectively engage families and
  parent leaders in quality improvement activities
• Describe common barriers encountered when
  clinicians seek to engage family participation
• Describe how NICHQ projects have resulted in
  sustainable changes in the system of care
  delivery and the attitudes of those providing
  care
• Share positive models of parent involvement in
  quality improvement activities

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Agenda
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What barriers are encounters by clinicians when
adding Parent/Families to your Improvement Team?

• Providers do not know how to ask parents
• Providers are unsure what to have them do
• Parents come with different skills sets
• Parents are busy
• Parents may need support (time)
• No compensation for the work

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Why Have Parent/Family Partners?

• Parents are an essential element in helping to
  create sustainable, quality systems that meet the
  needs of the children and families served!
• Parents provide perspective
• Parents keep the focus on change
• Parents provide the consumer voice
• Parents understand the needed change
• Parents have passion
• Parent's are connected to the community
• Parents know about resources and network
  together
• Parents provide leadership
• Parents accelerate improvement
• Dont be afraid ..it is the right thing to do!
• Parents have the best ideas!

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Consumer Voice

• Would a major
• manufacture put out a
• new product without a
• consumer survey?

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Why Add a Parent to the Team?

• You will learn how powerful family support is and
  how wonderful their ideas, energy and commitment
  is to your organization
• It will give you a competitive edge in your
  market place
• Help to avoid costly mistakes
• Improve patient safety and patient satisfaction
• It will complete the team and involve all the
  stakeholders

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Debunking the Myths

• Parents from Hell The angry parent
• Relegated roles i.e., the cookie mom
• Parents can only represent their own experience
• Parents dont understand systems
• Parents wont be able to step out of their own
  bias
• If parents are paid by the system,
• they cant represent true parent perspective
• NO TURNING BACK! Positive experiences open new
  doors

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Benefits for Families and Providers

• Families
• Improves service for their children
• Provides opportunity to bring about change
• Satisfying to make a contribution or give back to
  the system
• Opportunity to network with others
• Expands knowledge and skills

• Providers
• Increases knowledge and skills, empathy and
  understanding
• Synergy of the team and better team
• Brings fresh perspectives
• Provides an ally, energy, ideas
• Competitive Edge
• Improves consumer satisfaction
• Saving costly mistakes

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Parent Video
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Discussion

• What did you think?
• Would this be helpful in your work?
• Did anything in the video surprise you?
• Do you have any questions?

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History of NICHQs Approach to Family Engagement

• Medical Home Learning Collaborative asking teams
  to identify a parent (2002)
• Medical Home Learning Collaborative II parent
  faculty (2004)
• Identified a procedure to ensure families engaged
• Since then-epilepsy (2005), Obesity, Mental
  Health, Hearing Collaborative (2005)
• Today Integrated System of Care for CYSHCN (2007
  till present)

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Getting started sources of parents partners

• Your practice/clinic ask physicians and other
  staff for suggestions
• Consider those families who have provided
  feedback before
• Parent Advocacy Groups
• Family Voices
• Institute for Family-Centered Care
• CHADD
• Patient/Family Center in local institutions
• Look in the community

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Look for individuals who

• Share insights
• See beyond their situation
• Are not focused on an individual issue
• Have good communication skills
• Interact well with others
• Have a positive outlook
• Have experience with the condition or issue of
  focus

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The Invitation

• Develop a Core Team for project
• Define exact role an advisory panel, QI project
  or other activity
• Send out letters good practice
• Personal phone call from team member best
  practice
• Emphasis on having their voices heard
• No right answers their insight is needed
• Getting their suggestions for improvement

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Orientation and ongoing support for family
partners

• What do parents need?
• Orientation
• Information-objectives, mission, goals, direction
• Knowledge about improvement model
• Stay in focus-be clear about activities and
  expectations
• HIPAA training
• Agency specific clearance
• Compensation negotiated at outset (childcare,
  mileage, lunch)
• Ongoing
• Support-mentor
• Build trust with practice team and other parents
• Help maintaining a balance
• Feedback
• Connections

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Roles for Parent/Family Partners

• Serve as support/educator for other families
• Identify specific needs and/or gather information
  about local resources
• Identify and help access community
  resources/support
• Take an active role to promote mission/goals
• Cultural broker
• Outreach to communities

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Activities for Parent/Family Partners

• Concrete Examples
• Focus group
• Newsletter
• List serve
• Web site
• Articles
• Time study
• Advisory Board
• Task or Committee member
• Parent to Parent contact
• Reviewer/Consultant/Educator
• Planner
• Survey

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Lessons Learned from Parent Partners

• Working with a health care team to see what they
  do and develop a better understanding of the
  process for making changes
• Time
• Energy
• Commitment
• Everything is a process
• Keep asking questions and encourage others to try
  new ideas and stick with it
• Change will come in time and is worth it

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Lessons Learned by the Health Care Team

• It is not about us it is about them
• Health Care needs a Team approach
• There is great power in peer support
• Given the chance patients will put in the time,
  energy and commitment to make active changes for
  themselves and the practice
• The Administration can be supportive of new ideas
  
• Improved our Listening Skills for each other and
  our patients

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Engaging Families as Partners in Improvement

• Slides by Marie Abraham
• Institute for Family Centered Care
• adapted and presented by
• Pat Heinrich, RN, MSN
• V.P. Programs, NICHQ

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EXAMPLES

• Patients and Families
• as Partners in Improvement

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NICHQ/MCHB Awareness and Access to Care for
Children and Youth with Epilepsy

• www.nichq.org

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Medical Home

• Core team MD, Nurse or Case Manager, and a
  parent.
• Rapid cycle improvement.
• Developing a system of care, tracking, and
  monitoring children.
• www.medicalhomeimprovement.org

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Care Notebook
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A care map
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Brown University Family Care Center, Providence RI

• Helping redesign documents, forms, and processes
  to support self-management within the clinic visit

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Family HealthCare Center, Fargo, ND

• Creating a Patient Advisory Council, developing
  patient portals on the Web site, and planning,
  implementing, and evaluating group visits

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Tripler Army Medical CenterHonolulu, HI
Partnering with patients with diabetes and their
families for advocacy and to enhance education
and support programs.
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Learning Not Waiting . . .
Through family and community partnerships,
waiting areas are becoming places of learning,
enrichment, and support for patients and
families.
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Brown University Family Care Center, Providence RI
Patient and Family Advisory Council participating
in the development of a newsletter.
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La Familia Medical CenterSanta Fe, New Mexico

• Promotores, adult and adolescent patients with
  diabetes, are hired to provide peer support and
  education for patients and assist in developing
  the program.
• Family medicine residents work in the clinic and
  have an opportunity to learn from the promotores.

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The Joint Commission

• A trusted friend or family member should
  accompany the patient for clinic and hospital
  visits.

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The Public Reporting of Quality

• Fostering the partnerships among patients,
  families, clinicians, and others to encourage
  constructive dialogue and further improvement
  when reporting quality data publicly.

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American Academy of Pediatrics

• 2001 and 2007 Family-Centered Home Care, a
  chapter developed by the Institute for
  Family-Centered Care and co-authored by a parent
  of children with special needs.
• A Self Assessment Inventory Family-Centered
  Pediatric Home Care included in the publication.
• 2003 Policy Statement in Pediatrics

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• You have given us the lollypop and we are not
  giving it back.

http//www.pickereurope.org/page.php?id13 http//
www.cgsupport.nhs.uk/Programmes/Patients_Accelerat
ing_Change_Programme.asp
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United Kingdoms National Health Service Mandates
Partnership in all Primary Care Practices and
Hospitals

• http//www.pickereurope.org/print.php?id13page/
  page.php

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PBS Series Wins First Place at 2006 Association
of Health Care Journalists Awards

• Key themes are
• Patient- and family-centered care.
• Engaging the patient and family in care and
  decision-making.
• Enhancing communication and collaboration.

http//www.ramcampaign.org/ http//www.remakingame
ricanmedicine.org/episode_home.html
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• I am
• NOT
• just
• my
• Diagnosis!
• one page snapshot

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(No Transcript)
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Parent experts change contributions

• Expanded use of care notebooks
• I Am page to help clinician see children a
  people and not just patients
• Written Action plans for parents
• Written Action plans for schools
• Home medication lists
• Good ideas for facilitating communication between
  primary and specialty care
• Community Resource List
• Seizure Description Tool
• Train Primary Care - questions about medications
  to the Mississippi team for use in training PCPs
  to better work with parents of children with
  epilepsy
• Transition to Adult Care
• Parent-to-Parent Group for newly diagnosed
• Psychosocial screening and education
• Notes to doctor / visit preparation form

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Parent experiences in learning collaboratives

• Personal successes
• Making a difference in other families lives
  being recognized as an authority
• A chance to give back and get outside of the
  stresses of caring for a child with epilepsy
• Turning an adversarial relationship with
  professionals into a collaborative one
• Renewed hope that conditions WILL improve for
  children with epilepsy

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Parent experiences in learning collaboratives

• Personal successes
• New jobs, including paid positions as parent
  advocates on hospital advisory boards
• Networking and empowerment
• Learning the importance of family-centered care
  and getting the skills to ask for it
• Speaking about the collaborative and having the
  president of a hospital come up and say that he
  now realizes the importance of treating the family

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Team Triumphs

• Care notebooks displayed in California doctors
  offices as well as clinics throughout Orange
  County
• Presentation of care notebooks to epilepsy
  alliances and foundations so that the idea can
  spread
• Resource sheets in Wisconsin that will hopefully
  be in every parents hand when their child is
  diagnosed with epilepsy
• Tip sheets in Wisconsin that help families
  understand various problems and life issues that
  they are or will be facing

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Team Triumphs

• Tip sheets brought to schools to further
  education, especially during the IEP process
• A simple mental health screen for every patient
  as an initial attempt to tackle the mental health
  field
• Training of primary care providers in Mississippi
• Jersey Shore Medical Center tool kit for epilepsy
  patients

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Engaging parents as partners in any health care
initiative is of paramount importance. What all
of the parents agree on is that their
participation in the collaborative not only
changed the way some of the clinics and hospitals
are treating their patients and their families,
but that their personal lives have been affected
in profound ways. The empowerment that comes from
actively participating on behalf of your child
WITH your doctor and medical team as opposed to
being on the defensive is not quantifiable. Once
the parents realized that their opinions were not
only going to be heard but actually sought and
expected, their confidence and hope increased,
and they were really able to contribute in
meaningful and measurable ways to whatever
improvements their teams were working on.
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The Future Potential for Parent Leaders

• The future for family engagement is unlimited!
• Reviews
• Research
• Tools
• Articles
• Nothing about us
• without us

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Q A