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 http://mcaap.org/wp2013/wp-content/uploads/2015/06/CHA-Practice-Improvement-Team-Toolkit.pdf |
| 8. |
Module 14: Creating Quality Improvement Teams and QI Plans (AHRQ) https://www.ahrq.gov/professionals/prevention-chronic-care/improve/system/pfhandbook/mod14.html |
| # | Guides |
| 9. |
Advancing the Practice of Patient-and-Family-Centered Care in Primary Care and Other Ambulatory Settings. www.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 https://pcpcc.org/sites/default/files/Patient%20%26%20Family%20Partner%20Roles.pdf |
| 15. |
IPFCC Sample Advisor Confidentiality Contract – requires login |
| 16. |
Patient and Family Council Implementation Guide – requires login |
| 17. |
SFDPH Patient Advisor Application https://www.pcpcc.org/sites/default/files/resources/SFHN-Patient-Advisor-Application-English.pdf |
| 18. |
SFDPH Patient Advisory Council Role Checklist https://www.pcpcc.org/sites/default/files/resources/SFHN-PAC-Role-Descriptions.pdf |
| 19. |
Partnership for Patients (PfP) Strategic Vision Roadmap for Person and Family Engagement (PFE) http://www.hret-hiin.org/Resources/pfe/16/FINALPFEStratVisionRoadmap.pdf |
| # | Videos |
| 20. |
UCSF Engaging Patients in Improving Care Video https://cepc.ucsf.edu/engaging-patients-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 http://interfaithmilw.org/wp-content/uploads/2014/02/FCSN_Being-an-Advocate.pdf – 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.)?
| # | 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
http://familiesusa.org/sites/default/files/product_documents/Shared-Decision-Making.pdf |
| 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
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| 3. | AMA Implementing Health Coaching Module |
| 4. | AMA Improving Blood Pressure Control Module
www.stepsforward.org/modules/hypertension-blood-pressure-control |
| 5. | ACP Motivational Interviewing Module
https://practiceadvisor.org/Modules/improving-clinical-care/motivational-interviewing *Note: must be a member of ACP to access |
| 6. | AHRQ Question Builder
https://www.ahrq.gov/patients-consumers/question-builder.html – 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
https://pcmh.ahrq.gov/sites/default/files/attachments/pcpf-module-32-self-management-support.pdf – 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
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5.
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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.
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6.
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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.
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7.
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Transforming Healthcare Quality through Health IT, Agency for Healthcare Research and Quality (AHRQ) (2016)
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8.
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How’s Your Health
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9.
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Patient Engagement Toolkit, HIMSS transforming health through IT. (2016)
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10.
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Patient Portal Toolkit, The American Health Information Management Association (AHIMA) (2016)
– Requires registration and fees of $175 per member or $45 for students.
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11.
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HealthIT.gov Patient Engagement Playbookhttps://www.healthit.gov/playbook/pe/
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12.
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Health IT Tools and Resources, Agency for Healthcare Research and Quality (AHRQ) (2016)
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13.
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Web Applications for Patient Communications
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14.
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Implications of Direct Patient Online Access to Radiology Reports Through Patient Web Portals
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15.
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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.
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16.
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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.
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17.
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An Asynchronous Online Collaboration Between Radiologists and Patients: Harnessing the Power of Informatics to Design the Ideal Patient Portal
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18.
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Social Media and the Patient Experience
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19.
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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.
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20.
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The Business Case for Increasing Patient Portal Adoption,Landi, H., Healthcare Informatics (2016)
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21.
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Text Messaging for Managing Chronic Disease: A model for tailored health communication, Uhrig, J. (n.d.), AHRQ Publication No. 12-0070-1-EF. https://healthit.ahrq.gov/sites/default/files/docs/page/uhrigsuccessstory.pdf
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22.
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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/
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23.
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FAQ: Can you use texting to communicate health information, even if it is to another provider or professional? HealthIT.gov (2013)
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24.
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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
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25.
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AHRQ Patient Access to Medical Notes
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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
https://health.gov/communication/hlactionplan/pdf/Health_Literacy_Action_Plan.pdf |
| 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
www.iceforhealth.org/library/documents/ICE_C&L_Provider_Toolkit_7.10.pdf |
| 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
https://health.gov/communication/literacy/quickguide/quickguide.pdf |
| 17. |
| # | 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
https://nam.edu/wp-content/uploads/2015/06/BPH_Ten_HLit_Attributes.pdf |
| 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
https://www.hsag.com/en/medicare-providers/care-coordination/medication-management/ |
| # | 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
http://www.ihi.org/resources/Pages/Tools/SelfManagementToolkitforClinicians.aspx |
| 29. | Diabetes Literacy and Numeracy Education Toolkit |
| 30. | Million Hearts Medication Adherence Featured Tools
https://millionhearts.hhs.gov/tools-protocols/medication-adherence.html |
| # | Guides |
| 2. | AHRQ Rx Medicine Instructions Guide
http://www.ahrq.gov/professionals/quality-patient-safety/pharmhealthlit/prescriptionmed-instr.html |
| 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
http://www.pharmacist.com/medication-management-care-transitions-best-practices |
| 7. | Patient-Centered Primary Care Collaborative’s Integrating Comprehensive Medication Management to Optimize Patient Outcomes
https://www.pcpcc.org/sites/default/files/media/medmanagement.pdf |
| # | Videos |
| 8. | Motivational Interviewing Example: Medication Usage
https://www.youtube.com/watch?v=b_8PnKBktr8 – Motivational interviewing examples |
| 9. | Effectively Communicating Medication Instructions
– Need new link |
| 10. | Next Step in Care: Family Caregivers Guide to Medication Management
http://nextstepincare.org/Caregiver_Home/Medication_Management_Guide/videos_about_Medication/ – Six podcasts |
| 11. | Video on Coaching Patients for Successful Self-Management
http://www.chcf.org/publications/2008/08/video-on-coaching-patients-for-successful-selfmanagement |
| 12. | Video with Techniques for Effective Patient Self-Management
http://www.chcf.org/publications/2006/08/video-with-techniques-for-effective-patient-selfmanagement |
Component Seven: General Resources
General Resources: These are general tips for dust and wipe down the house by a cleaning contractor from Arizona. 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
http://pfacnetwork.ipfcc.org/main/summary – 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
file:///C:/Users/lhassebrock/Downloads/Fostering%20Consumer%20Engagement%20in%20Practice%20Transformation.pdf – 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
https://nam.edu/wp-content/uploads/2015/07/PFHCL-Resource-Compendium-rev17Jul15.pdf |
| 21. | IPFCC Advancing Patient and Family-Centered Care |
| 22. | ACP Engage Patients Module
https://www.practiceadvisor.org/Modules/building-the-foundation/engage-patients |
| 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)
http://www.jacr.org/issue/S1546-1440(16)X0013-0 – 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) |
