The Upside of Down: A Memoir - buy book, ebook

Published by Transit Lounge Publishing

By Susan Biggar


Putting Patients First  Best Practices in Patient-Centred Care Second Edition

Published by Jossey-Bass 

by Dr Susan Frampton, President of Planetree, together with Patrick A Charmel, MPH, FACHE, president and chief executive officer of Griffin Hospital and Griffin Health Services Organisation. 


Time to Care

Dr Robin Youngson has recently published a book entitled TIME TO CARE - How to love your patients and your job.   

An anaesthesiologist trained in the UK and practising in New Zealand for the past twenty years, Robin has for years been a lone voice on the international speaking circuit for compassionate, whole patient care. This book has received excellent reviews from healthcare professionals world-wide.  Do check out the website.   




Patient & Family Leadership Resource Compendium 

This Compendium was created to assist and to inform volunteer patient & family council leaders and such leaders have contributed valuable feedback from its inception to its completion. It presents summary information on available evidence and information about the impact of patient and family engagement on health care outcomes and care improvement. It is intended to be a continuously updated living resource....  (added Aug 2015)

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See discussions, stats, and author profiles for this publication at: 


Patient, companion, and oncologist agreement regarding information discussed during triadic oncology clinical interactions

Authors:    Susan Eggly1 *, Louis A. Penner1 , Nao Hagiwara1 , Richard Gonzalez2 , Felicity W. K. Harper1 , Elisabeth I. Heath1 and Terrance L. Albrecht1

Source:     Psycho-Oncology Psycho-Oncology 22: 637–645 (2013) Published online 15 February 2012 in Wiley Online Library ( DOI: 10.1002/pon.3045


What patients are reading about non-invasive prenatal testing:  An evaluations of Internet content and implications for patient-centered care.

Authors:              Mercer M.B.; Agatisa P.K.; Farrell R.M

Abstract:             Objective: Patients' use of the Internet as a source of health information is increasing. The objective of this study was to describe and evaluate Internet-based information about noninvasive prenatal testing (NIPT), an important new genetic test currently available to high-risk women in early pregnancy.

Methods: Websites were sampled using leading search engines to mirror Internet-based search patterns of individuals seeking information about NIPT. Content analysis was conducted to assess website reading level, quality, and content. Results: Basic information about NIPT use as a screening test was accurately described. Overall, sampled websites lacked balance and comprehensive information about NIPT and the complexity of decision making involved in electing for its use. All websites were written at reading levels higher than currently recommended levels for public health information.

Conclusion: While online resources should be used with reservation, they can be an important tool to support effective communication and patient-centered care. Online information can help both health care providers and pregnant patients who face a growing number of fetal genetic testing options.

Source: Prenatal diagnosis.  34 (10) (pp 986-993), 2014.  Date of Publication:  01 Oct 2014.


Caring for One of Our Own

Authors:            Schapira, et al. The Oncologist 2014; 19:545-549

Abstract:           Schwartz Center Rounds are monthly multidisciplinary meetings where caregivers reflect on important psychosocial issues that they, along with patients and their families, face and gain insight and support from fellow staff members with the goal of advancing compassionate health care, supporting caregivers and fostering the connection between a clinician and his/her patients.  This Schwartz Round focused on boundaries and the particular privileges and pressures of caring for a member of the staff.  The article explores the tension between professional courtesy and empathetic engagement.  Major transitions can include the intrinsic fear of abandonment. Being "connected" is an important aspect of the patient-caregiver relationship. Patient-centered care requires that we balance clinical acumen and medical technology with humanism throughout the different phases of a patient's experience with a life-threatening illness. ©

Source:    AlphaMed Press 2014.


Patient-centered care in adult trauma intensive care unit.

Author:             Hasse G.L.

Abstract:           The purpose of this study was to discover unique aspects of caring for adult trauma intensive care unit patients with respect to implementing patient-centered care.  This concept has been discussed since 2000, but the actual implementation is currently becoming the focus of health care.  The Institute of Medicine defined patient-centered care as “providing care that is respectful of and responsive to individual patient preferences, needs and values and ensuring that patient values guide all clinical decisions.”  In the 2001 Crossing the Chasm Quality report.  Discussion and documentation of patient-centered care of the intensive care trauma patient population are limited and yield no results for publication search.  This article explores the concept of delivering patient-centered care specifically in a trauma adult intensive care unit.

Source:   Journal of Trauma Nursing : the official journal of the Society of Trauma Nurses. 20 (3) (pp 163-165), 2013. Date of Publication: 2013 Jul-Sep.


Toward patient-centered care: a systematic review of how to ask questions that matter to patients.

Authors:  Rosenzveig A.;  Kuspinar A.; Daskalopoulou S.S.; Mayo N.E.

Abstract:     Clinicians rarely systematically document how their patients are feeling.  Single item questions have been created to help obtain and monitor patient relevant outcomes, a requirement of patient-centered care.  The objective of this review was to identify the psychometric properties for single items related to health aspects that only the patient can report (health perception, stress, pain, fatigue, depression, anxiety, and sleep quality).  A secondary objective was to create a bank of valid single items in a format suitable for use in clinical practice. 

Source:              Medicine. 93 (22) (pp e120), 2014. Date of Publication: 01 Nov 2014.


Stimulated recall methodology for assessing work system barriers and facilitators in family-centered rounds in a pediatric hospital.

Authors:      Carayon P.; Li Y.; Kelly M.M.; DuBenske L.L.; Xie A.; McCabe B.; Orne J.; Cox E.D.

Abstract:    Human factors and ergonomics methods are needed to redesign healthcare processes and support patient-centered care, in particular for vulnerable patients such as hospitalized children.  We implemented and evaluated a stimulated recall methodology for collective confrontation in the context of family-centered rounds.  Five parents and five healthcare team members reviewed video records of their bedside rounds and were then interviewed using the stimulated recall methodology to identify work system barriers and facilitators in family-centered rounds.  The evaluation of the methodology was based on a survey of the participants, and a quantitative analysis of interview data in light of the work system model of Smith and Carayon (1989, 2001).  Positive seuvey feedback from the participants was received.  The stimulated recall methodology identified barriers and facilitators in all work system elements.  Participatory ergonomic methods such as the stimulated recall methodology allow a range of participants, including parents and children,  to participate in healthcare process improvement.

Source:           Applied Ergonomics. 45 (6) (pp 1540-1546), 2014. Date of Publication: 2014


BMJ is running a spotlight on patient centred care articles here

An investigation of factors that impact patients’ subjective experience of nurse-led clinics: a qualitative systematic review. Journal of Clinical Nursing, Volume 24, Issue 1-2, Article first published online: 19 SEP 2014 - here

Jakimowicz, S., Stirling, C. & Duddle, M. (2014)

Patient-centered care retreats as a method for enhancing and sustaining compassion in action in healthcare settings - here

Sara Gaustello & Susan B Frampton

Changes in Hospital Care in North America

Recently reported recognition for value of family support for patients in hospital.  See story.

When a Stressful Hospital Stay Makes You Sick  See story.

And this video from a teenage patient.


Narrowing the gap between organisational demands and the quest for patient involvement: The case for coordinated care pathways.

There is an increasing emphasis on including the patients’ perspective and at the same time healthcare providers are moving towards evidence based care and standardising operating procedures. Often these pathways clash.

Marjan J Faber, Stuart Grande, Hub Wollersheim, Rosella Hermens and Glyn Elwyn consider the case for co-ordinated pathways.

published in the International Journal of Care Coordination


Transforming the Healthcare Experience Through the Arts

Blair L Sadler and Annette Ridenour published by Asthetics. Inc, San Diego, California.

Annette Ridenour Talks about Business Case for the Arts in Healthcare, providing Case studies and Resources for Artists and Healthcare Facilities.  In this article, she outlines the benefits of reducing fear and anxiety experiences and improving the overall patient outcome.


What 'Patient- Centred' Should Mean: Confessions of An Extremist.

By Donald M Berwick - Health Affairs Web Exclusive

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Patients' and family members' views on how clinicians enact and how they should enact incident disclosure:  the "100 patient stories" qualitative study

Article in BMJ by AIPFCC Associate Rick Iedema and others  BMJ 2011;343:d4423 doi: 10.1136/bmj.d4423

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More Input from Patients

Give patients a greater say in tackling harmful doctors First published in The Age,  January 4, 2014

Susan Biggar, AIPFCC Board Member   


Educational inequalities in patient-centred care: patients’ preferences and experiences

Jany Rademakers, Diana Deinoij, Jessica Nijman and Dolf de Boer


Safety is personal. Partnering with Patients and families for the safest care

The National Patient Safety Foundation’s Lucian Leape Institute


"We must remember the patient as a person. "  from a blog by Colleen Sweeney

Twelve myths about shared decision making

by France Legare and Philippe Thompson-Leduc

This paper summarizes a keynote address held in the fall of 2013 at the International Conference on Communication in Healthcare.



Kissing It Better

There are some wonderful ideas for both improving healthcare experiences at Kissing It Better,  a website about working to enhance patient care in over 11 NHS Trusts and numerous care homes across the UK.  

Hearts in Healthcare

David Moen on Patient Centred Care


Salmaan Sana "Compassion for Care"

Medical Student Salmaan ( @salmaansana ) tells his personal story on how compassion was his drive to get into healthcare, shares what happened to him as a medical student Next he unveils the Compassion for Care Charter and what this joined initiative of the IFMSA and the Radboud REshape & Innovation Center is about.

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