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Person & Family Engagement

Patient Voices / PFAC

Sponsored Webinar: How to Form a Patient and Family Advisory Council

National expert Chrissie Blackburn, Principal Advisor, Patient, and Family Engagement,
University Hospitals Health System, Cleveland, Ohio, provides guidance on how to form a Patient and Family Advisory Council (PFAC).


For Clinicians participating in TCPI seeking to transform care through increased person and family engagement, TCPI has provided this organized collection of PFE resources, highlighting select resources deemed to be most practical and user-friendly for TCPI purposes. Resources are organized according to the six PFE Components. You will find notes which indicate whether the resource is applicable to MIPS, the TCPI Change Package and whether the resource is CME/CEU-eligible. “Editor’s Choice” picks are highlighted for quick and easy selections by users.

Six PFE Components:
  • Patient Voice
  • Shared Decision Making
  • Patient Activation
  • e-Tools
  • Health Literacy
  • Medication Management

The resources below are from the TCPI Compendium of Person & Family Engagement Tools and Resources which was compiled by CMS and TCPI. Click on the (+) to view the full list of links and PDFs.

Component One: Support of Patient Voices in Governance and operational Decision-making

Support of Patient Voices: Are there policies, procedures and actions taken to support patient and family participants in governance or operational decision-making committees of the practice (Person and Family Advisory Councils, Board Representatives, etc.)?

# Websites
1. Patient and Family Engagement in Primary Care


2. PCPCC SAN/IPFCC Patient and Family Curriculum


3.  PAC Collaborative Resources from the San Francisco Health Network


4.  Patient and Family Engagement: Learnings from the Partnership for Patients


# Toolkits
5. Numerous patient engagement toolkits produced by the University of Wisconsin 


6.  Patient Centered Medical Home Initiative www.rwjf.org/en/library/research/2013/03/engaging-patients-in-improving-ambulatory-care.html
7.  Cambridge Health Alliance’s Practice Improvement Team


8.  Module 14: Creating Quality Improvement Teams and QI Plans (AHRQ)


# Guides
9. Advancing the Practice of Patient-and-Family-Centered Care in Primary Care and Other Ambulatory Settingswww.ipfcc.org

–        Four Attachments: Assessment tool, Progress sheet, Interview questions, and Application form

–        Guide to Creating Patient and Family Advisory Councils http://www.ipfcc.org/resources/Advisory_Councils.pdf

10. AMA Forming a Patient and Family Advisory Council


11.  Working with Patient and Families as Advisors (AHRQ)


12.  AMA Listening with Empathy Module


13.  IPFCC Patient and Family Advisor Application


–        Requires login

14.  IPFCC Patient and Family Partners Roles


15.  IPFCC Sample Advisor Confidentiality Contract


–        requires login

16.  Patient and Family Council Implementation Guide


–        requires login

17.  SFDPH Patient Advisor Application


18.  SFDPH Patient Advisory Council Role Checklist


19.  Partnership for Patients (PfP) Strategic Vision Roadmap for Person and Family Engagement (PFE)


# Videos
20.  UCSF Engaging Patients in Improving Care Video


21.  Transforming Clinical Practice In Partnership with Patient and Family Advisors by IPFCC


22.  Tips on Starting a Patient and Family Advisory Council for Quality & Safety


23.  How Meaningful Patient Engagement Drives Value & Shared Vision for Change


24.  Beyond Projects & Programs: 5 Steps to Patient-Centered Culture Change


25.  The Role of Leadership in Creating a Culture of Patient-and Family-Centered Care


# Articles
26.  AHRQ PAC First Street Family Health of CO Case Study


27.  Being an Advocate


–        Brochure on being a family advocate

28.  Patient and Family Center Care – Why Radiology http://www.jacr.org/article/S1546-1440(16)30951-6/abstract
29.  Patient and Family Engagement in Research in Era 3


30.  Tale of Two Perspectives on Cancer: What I Wish I Knew Before Cancer – Radiologist and Patient Perspectives


31.  Imaging 3.0 Case Study: When the Radiologist Becomes the Patient



Component Two: Shared Decision-Making

Shared Decision-Making: Does the practice support shared decision-making by training and ensuring that clinical teams integrate patient-identified goals, preferences, outcomes, and concerns into the treatment plan (e.g. those based on the individual’s culture, language, spiritual, social determinants, etc.)?

# Websites
1.  Informed Medical Decisions Foundation


2. Agency for Healthcare Research and Quality (AHRQ)


3. Society for Participatory Medicine


4.  National Patient Safety Foundation


5.  Choosing Wisely (Consumer Reports)


6.  US Department of Veteran Affairs


7.  Families USA


8.  National Patient Safety Foundation


9.  Healthwise


10.  HIMSS



11. Ottawa Hospital Research Institute


12.  ACP Decisions (Advanced Care Planning)


13. Mayo Clinic Shared Decision Making National Resource Center



14.  Diabetes Glycemic Targets and Insulin Therapy


15. Shared Decision Making for Medical Practices http://www.healthcarecommunities.org/Communities/MyCommunities/TCPI/TCPI/ChangePackage/Patient-CenteredCareDesign.aspx#item-1077-103601
16.  Option Grid Decision Aids


# Guides
17.  Helping People Share Decision Making. The Health Foundation Inspiring Improvement; 2012
18.  Partnering with Patients to Drive Shared Decisions, Better Value, and Care Improvement. Institute of Medicine Meeting Summary (August 2013)
19. Shared Decision-Making Strategies for Best Care: Patient Decision Aids. Evidence Communication Innovation Collaborative of the IOM Roundtable on Value and Science-Driven Health Care; National Academy of Sciences; (September 2014)
20. The SHARE Approach: A Model for Shared Decision Making. AHRQ AHRQ Pub. NO. 14-0034-1-EF April 2016
21.  Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis.


22. Shared Decision Making: Engaging Patients to Improve Health Care. Families USA, May 2013


23.  Shared Decision Making: Advancing Patient-Centered Care Through State and Federal Implementation. Informed Medical Decisions Foundation; National Academy for State Health Policy; March 2012
24.  AMA End of Life Planning Module


# Videos
  Clinician Videos
25.  A Bilateral Knee Replacement Decision


26.  Shared Decision Making: How It Looks


  Providence Health Care: A Decision Aid to Prepare Patients and Their Families for Shared Decision-Making About Cardio-Pulmonary Resuscitation (CPR)
27.  https://vimeo.com/90248639
28.  http://personcentredcare.health.org.uk/resources/shared-decision-making-videos-magic-programme


# Articles
29. A Demonstration of Shared Decision Making in Primary Care Highlights Barriers to Adoption and Potential Remedies, Freidberg MW, Van Busum K, Wexler R, Bowen M, and Schneider EC; Health Aff 32, NO. 2 (2013): 268-275
30. Informing and Involving Patient to Improve the Quality of Medical Decisions, Fowler JR. FJ Leven CA, Sepucha KR; Health Aff 30 NO. 4 (2011): 699-706
31.  Shared Decision Making – The Pinnacle of Patient-Centered Care, Barry, MJ, Edman-Levitan, S; NEJM, 366-9; March 1, 2010
32.  Shared Decision Making to Improve Care and Reduce Costs; Oshima Lee, E, Emanuel EJ; NEJM 368-71; January 2, 2013
33. Introducing Decision Aids at Group Health was Linked to Sharply Lower Hip and Knee Surgery Rates and Costs; David Arterburn, M.D., M.P.H., Robert Wellman, M.S., Emily Westbrook, Carolyn Rutter, Ph.D., Tyler Ross, M.A., David McCulloch, M.D., Matthew Handley, M.D., and Charles Jung, M.D. Health Affairs, September 2012 31(9):2094-104
34. Twelve Myths About Shared Decision Making; Le gare F, Thompson-Leduc P; Patient Education and Counseling 96 (2014) 281-286
35.  Shifting from Shared to Collaborative Decision Making: A Change in Thinking and Doing. Journal of Participatory Medicine; O’Grady L and Jadad A; Case Studies | Vol. 2, 2010 | November 8, 2010
36.  Promising Approaches from Behavioral Economics to Improve Patient Lung Cancer Screening Decisions



Component Three: Patient Activation

Patient Activation: Does practice utilize a tool to assess and measure patient activation?

# Websites
1.  Caregiver Assessment


–        Assessment of caregiver

# Toolkits
1.  Stanford Chronic Disease Self-Efficacy Scales


2.  Patient Health Engagement Scale


3.  AHRQ Patient Engagement Resources


4. Insignia PAM Survey


# Guides
2. Military Health System. (2012). Patient Activation Reference Guide. Available from http://www.health.mil/Military-Health-Topics/Access-Cost-Quality-and-Safety/Quality-And-Safety-of-Healthcare/Patient-Safety/Patient-Safety-Products-And-Services/Toolkits/Patient-Activation-Reference-Guide


3. AMA Implementing Health Coaching Module


4.  AMA Improving Blood Pressure Control Module


5.  ACP Motivational Interviewing Module


*Note: must be a member of ACP to access

6.  AHRQ Question Builder


–        AHRQ’s Question Builder helps patents and families be prepared. Individuals can use this resource to prepare a list of questions for their next medical appointment.

7.  Facilitation Curriculum Module 32: Improving Self-Management


–        Practice Improvement

8.  AHRQ Teach Back Learning Module


# Videos
9.  Understanding Motivational Interviewing


10.  NRHI Reducing Unnecessary Utilization Video Module 1. Lisa Letourneau, MD (2016)


–        This is a 60-minute video presented by the NRHI SAN that addresses reducing unnecessary utilization by creating clinician and consumer engagement to implement Choosing Wisely in practice. The video focuses on ways practices can implement Choose Wisely efforts and to understand how these efforts translate into practice workflows. This video is also aligned with change concepts 1.1.3 (Collaborate with patients and families) and 3.4.2 (Eliminate waste)

11.  Motivational Interviewing — OARS Skills https://www.youtube.com/watch?v=_KNIPGV7Xyg

–        Motivational interviewing examples

# Articles
12.  Why Does Patient Activation Matter? An Examination of the Relationships Between Patient Activation and Health-Related Outcomes. Green j, Hibbard JH; J Gen Itern Med. 27(5) 520-6. May 2012
13.  Supporting Patient Behavior Change: Approaches Used by Primary Care Clinicians Whose Patients Have an Increase in Activation Levels. Greene J, Hibbard JH, Alvarez C, Overton V. (2016) Ann Fam Med, 14(2), 148-154.
14.  The Role of Patient Activation in Preferences for Shared Decision Making: Results From a National Survey of U.S. Adults. Smith, SG, Pandit, A, Rush, SR, Wolf, MS, Simon, CJ (2016). J Health Commun, 21(1), 67-75.
15.  What the Evidence Shows About Patient Activation: Better Health Outcomes and Care Experiences; Fewer Data on Costs. Hibbard JH and Greene J. Health Aff32, NO.2 (2013): 207-214
16.  Levels and Correlates of Patient Activation in Health Center Settings: Building Strategies for Improving Health Outcomes. Lubetkin El, Lu WH, Gold MR.
17.  Hibbard, J. & Minniti, M. (2012). An Evidence-based Approach to Engaging Patients. In D. Nash, J, Clarke, A. Skoufalos, & M. Horowitz (Eds.), Health Care Quality: The Clinician’s Primer (pp.245-262). American College of Physician Executives.


Component Four: E-Tools

E-Tools: Does the practice use an e-tool (patient portal or other E-Connectivity technology) that is accessible to both patients and clinicians and that shares information such as test results, medication management list, vitals and other information and patient record data?
What is a patient portal? HealthIT.gov (2015)
–        Overview of patient portal and benefits of use.  Contains links to provider stories touting benefits to patient outcomes, provider workflow, improved communication and patient engagement.
Health Information Technology Model, Rural Health Information Hub (RHIhub) (2016)
–        Includes bullet point overview of HIT model.  Lists links to webpages, webinars, and toolkits for additional information ie: HITECH Act, EHR, meaningful use, CMS, AHRQ, etc.
Transforming Healthcare Quality through Health IT, Agency for Healthcare Research and Quality (AHRQ) (2016)
How’s Your Health
Patient Engagement Toolkit, HIMSS transforming health through IT. (2016)
Patient Portal Toolkit, The American Health Information Management Association (AHIMA) (2016)
–        Requires registration and fees of $175 per member or $45 for students.
HealthIT.gov Patient Engagement Playbookhttps://www.healthit.gov/playbook/pe/
Health IT Tools and Resources, Agency for Healthcare Research and Quality (AHRQ) (2016)
Web Applications for Patient Communications
Implications of Direct Patient Online Access to Radiology Reports Through Patient Web Portals
Best Practices for Patient Portals, HIMSS (2014)
–        Topics include: branding, user experience & functionality; information display; use appropriate language; anticipate obstacles to adoption; and optimal outcomes for patient portals.
Meaningful Use Case Studies: Patient portal benefits patient care and provider workflow, HealthIT.gov
–        Includes info on patient portal implementation, getting patients registered, sample talking points for providers, benefits, challenges, & lessons learned in patient portal implementation.
An Asynchronous Online Collaboration Between Radiologists and Patients: Harnessing the Power of Informatics to Design the Ideal Patient Portal
Social Media and the Patient Experience
Using Health Information Technology to Engage Patients in Their Care Gephart, S. & Effken, J. Online Journal of Nursing Informatics, 17(3), (2013)
–        Discusses HIT patient engagement strategies in relation to patient portals, personal health records (PHR), mobile health strategies, and telehealth.
The Business Case for Increasing Patient Portal Adoption,Landi, H., Healthcare Informatics (2016)
Text Messaging for Managing Chronic Disease: A model for tailored health communication, Uhrig, J. (n.d.), AHRQ Publication No. 12-0070-1-EFhttps://healthit.ahrq.gov/sites/default/files/docs/page/uhrigsuccessstory.pdf
FAQ 570:  Does the HIPAA Privacy Rule permit health care providers to use e-mail to discuss health issues and treatment with their patients? U.S. Department of Health and Human Services (HHS.gov) (2008)  http://www.hhs.gov/hipaa/for-professionals/faq/570/does-hipaa-permit-health-care-providers-to-use-email-to-discuss-health-issues-with-patients/
FAQ: Can you use texting to communicate health information, even if it is to another provider or professional? HealthIT.gov (2013)
Using Health IT to Engage Patients in their Care: The role of providers in implementing online access, Partnership for Women and Families (2012)
–        Experiences of physician pioneers in use of patient portals documented.  Demonstrates benefits of patient portals to providers and patients
AHRQ Patient Access to Medical Notes

Component Five: Health Literacy

Health Literacy: Is a health literacy patient survey being used by the practice (e.g., CAHPS Health Literacy Item Set)?

# Websites
1.  AHRQ Web Page on Health Literacy and Cultural Competency


2.  Translated Information for Patients about Preparing for Tests and Examination Procedures. https://ethnomed.org/patient-education/tests-procedures-radiology?platform=hootsuite
3.  Health Literacy Podcasts

–        Teach-Back (HLOL #129), After Visit Summaries (HLOL #152), Helping Teens Transition from Pediatrics to Adult-Centered Care (HLOL #132), Health Literacy Screening Tools (HLOL #124) and Choosing Wisely: A Campaign Helping Patients be Engaged Consumers (HLOL #104)

4.  National Action Plan to Improve Health Literacy


5.  National Institutes of Health


6.  The Office of Disease Prevention and Health Promotion


7.  AHRQ


# Toolkits
8.  Better Communication, Better Care: Provider Tools to Care for Diverse Populations


9.  AHRQ Health Literacy Universal Precautions Toolkit


10.  Agency for Healthcare Research and Quality Toolkit (2015)


–        This toolkit, written by The Agency for Healthcare Research and Quality, identifies universal precautions to ensure all patients and caregivers have no difficulty comprehending their health information. The aim of the set precautions are to; Simplify communication and minimize miscommunication, make the office environment and health care system easier to navigate, and to support patients efforts to improve their health.

11.  AHRQ toolkit


12.  Health Literacy Tool Shed


13.  AHRQ Health Literacy Measurement Tools


# Guides
14.  Cultural and Linguistic Competence Health Practitioner Assessment


15. The Language of Health – Promote Health Literacy www.hrsa.gov/healthliteracy/
16.  Quick Guide to Health Literacy


# Videos
18.  How Effective Health Care Communication contributes to Health Equity


# Articles
19.  A Proposed ‘Health Literate Care Model’ Would Constitute A Systems Approach To Improving Patients’ Engagement In Care. Howard K. Koh, Cindy Brach, Linda M. Harris, and Michael L. Parchman


20.  Ten Attributes of Health Literate Health Care Organizations. (2012). Cindy Brach, Debra Keller, Lyla M. Hernandez, Cynthia Baur, Ruth Parker, Benard Dreyer, Paul Schyve, Andrew J. Lemerise, and Dean Schillinger


21.  New Federal Policy Initiatives To Boost Health Literacy Can Help The Nation Move Beyond The Cycle Of Costly ‘Crisis Care’. Howard K. Koh, Donald M. Berwick, Carolyn M. Clancy, Cynthia Baur, Cindy Brach, Linda M. Harris and Eileen G. Zerhusen


Component Six: Medication Management

Medication Management: Does the clinical teamwork with the patient and family to support their patient/caregiver management of medications?

# Websites
1.  HSAG Medication Management Resources


# Toolkits
26.  Sutter Health: Diabetes Self-Management Tools and Resources


27.  South West Self-Management Program


28.   Partnering in Self-Management Support: A Toolkit for Clinicians


29.  Diabetes Literacy and Numeracy Education Toolkit


30.  Million Hearts Medication Adherence Featured Tools


# Guides
2.  AHRQ Rx Medicine Instructions Guide


3.  AMA Medication Adherence Module


4. Patient-Centered Primary Care Institute (PCPCI)


–        A patient booklet describing strategies for using medications successfully to alleviate symptoms of depression. This booklet focuses on antidepressant treatment but many of the principles and strategies also apply to using other medications successfully.

5. AHRQ (2014)


–        Explicit, standardized instructions improve patients’ understanding and possibly reduce errors while improving adherence. These tested instructions for pills follow the Universal Medication Schedule (UMS), which simplifies complex medicine regimens by using standard time periods for administration (morning, noon, evening, and bedtime). These instructions have also been translated into Chinese, Korean, Russian, Spanish, and Vietnamese.

6.  Medication Management in Care Transitions


7.  Patient-Centered Primary Care Collaborative’s Integrating Comprehensive Medication Management to Optimize Patient Outcomes


# Videos
8. Motivational Interviewing Example: Medication Usage


–        Motivational interviewing examples

9.  Effectively Communicating Medication Instructions

–        Need new link

10.  Next Step in Care: Family Caregivers Guide to Medication Management


–        Six podcasts

11.  Video on Coaching Patients for Successful Self-Management


12.  Video with Techniques for Effective Patient Self-Management



Component Seven: General Resources

General Resources: These are general resources from reliable PFE organizations that cover a variety of topics and provide useful resources in a one-stop shop.

# Websites
13.  CMS Person and Family Engagement https://www.cms.gov/Medicare/Quality-Initiatives-Patient-Assessment-Instruments/QualityInitiativesGenInfo/Person-and-Family-Engagement.html
14.  Augusta University: Patient- and Family-Centered Care (PFCC) is partnerships between and among patients, families and health care providers


15.  PFAC Network registration page


–        IPFCC hosted support and resource forum for patients and clinicians to discuss patient and family engagement 

16.  PCPCC Transforming Clinical Practice Initiative Webpage


–        Scroll down for the PFE resource library including webinars, publications, and other tools to support PFE

# Toolkits
17.  AHRQ CANDOR Toolkit


18.  Fostering Consumer Engagement in Practice Transformation: A Toolkit for Practices on the Journey to Patient-Centered Medical Homes


–        Practice Improvement

# Online Courses
19.  Patient, Family & Staff Engagement Across the Care Continuum (AANP-SAN)
# Guides
20.  Patient & Family Health Care Leadership: A Resource Compendium


21.  IPFCC Advancing Patient and Family-Centered Care


22.   ACP Engage Patients Module


23.  Advancing the Practice of Patient- and Family- Centered Care in Primary Care and Other Ambulatory Settings. How to Get Started


–        Publication from the Institute for Patient and Family-Centered Care

# Articles
24.  Patient Engagement Toolkit. (August 2016). University of Wisconsin-Madison


25.  Journal of American College of Radiology (PFCC Issue)


–        free compilation of 14 articles on radiology and the patient experience

26.  ·       Patient- and Family-Centered Care: A Primer


27.  ·       Using Quality Improvement Methods to Improve Patient Experience


28.  ·       Lessons Learned from Two Decades of Patient- and Family-Centered Care in Radiology, Part 1: Getting Started


29.  ·       Lessons Learned from Two Decades of Patient- and Family-Centered Care in Radiology, Part 2: Building a Culture


30.  ·       Focusing on the “Person” in Personalized Medicine: The Future of Patient-Centered Care in Radiation Oncology


31.  ·       Difficult Doctors, Difficult Patients: Building Empathy


32.  AHRQ Engaging Patients and Families PCMH


33.  From Bad to Great: How One Radiology Department Made the Transition (Radiology Business)


34.  The Path to Patient-Centered Radiology (Radiology Business)



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