I was dismayed to read about cuts to professional library staff at Sick Kids. The Toronto Public Library board has chosen to deal with funding shortfalls by ending its long-standing partnership with the hospital, and hospital spokespersons seem to think that volunteers will do the job of professional librarians. The children who use the Reading Room are among the sickest and most vulnerable in Canada. The Reading Room staff create normal and enriching experiences that add tremendously to their healing in a way that is difficult to quantify. It shocks me that neither the hospital nor the library is trying harder to preserve this service.Valerie's Toronto Star letter follows a letter to Toronto Public Library which struck a chord and the TPL response.
'Reading room adds to healing' tells Star readers that cutting library supports would be bad practise
Valerie McDonald takes her dismay and shock to readers of the Toronto Star:
Patient heath portals at Children's Hospital Boston and Cincinnati Childrens
The patient portals at Children's Hospital Boston is called MyChildren's (take a tour) as discussed in Information Week summarizes the expanding patient portal as of September 2009:
MyChildren's also allows bill payment
Cincinnati Children's My Care Connection states its objective in the phrase anchored at the top left of the portal landing page: Growing Through Knowing. The full name is the My Care Connection Chronic Condition Clinical Portals at Cincinnati Children's Hospital Medical Center and "The portals are designed to improve the quality of patient care":
The Cystic Fibrosis My Care Connection describes the purpose of the portal similarly, adding
The list of portal includes: "Lab results (Results can be viewed in text and in a graph); Height and weight data (with a graph); Lung function data (with a graph); Recent clinic visit dates; An area where you can ask non-urgent questions to specific members of the Cystic Fibrosis Care team. Your question will be answered by a caregiver within three business days." For urgent questions, readers are provided phone numbers to call.
A Tour introduction lists the goals of the portal as
You can view screen shots of the tabs in the My Care Connection portal which include
The tour also includes screenshots of all the features which are accessed by a tab navigation: first a clinic-specific tab with log of visits and information on labs specific to the decease and then Labs either by all labs, labs outside the normal range or most recent labs and option to download data to Excel; Test Results which shows a date and report name and lets you view the report; Medications and details for each medication such as name, dose, form, frequency, route and special instructions and clicking a column name sort the medications for example alphabetically; Email a Question has an archive of prior emails and a form with fields to select the clinic to whom addressed, add a subject line, enter the question and browse to attach up to 3 documents (pictures, school letters etc) to be sent with the question; Documents is a repository of all documents uploaded including those attached to email questions; Visits has tabs to see emergency, inpatient, and outpatient visits; and Patient Info apparently limited to demographic data (name, age, date of birth, address, and phone numbers).
While looking for clear descriptions of the features of Children's portal I came across a research paper titled Interactive Storytelling Environments: Coping with Cardiac Illness at Boston's Children's Hospital (1998) that shows innovative patient engagement some time ago, in the dog year cycles of technology.
Thoughtful House in Texas patient portal in Texas treats autism and includes a patient portal
Patient Portal and PHR Information
Data is currently fed to patients' health records from Children Hospital's internal Cerner electronic medical record system. With the new system, data will also be added to patients' records from eClinicalWorks EMR systems, which is the EMR platform used by the hundreds of Boston-area pediatricians and pediatric specialty-care doctors, who treat Children's Hospital patients on an out-patient basis.
Patients' personally controlled health records are accessible through Children's secure, Web-based MyChildren's patient portal. Individuals can grant permission to institutions, clinicians, researchers, and other users of medical information to access this data.
By combining patient data from the Cerner EMR system that the hospital uses internally with data from the EMR systems used by ambulatory-care clinicians, patients and their healthcare providers will have access to more comprehensive and complete clinical information about the patient, said Children's CIO Dr. Dan Nigrin.
"Data will be automatically fed from the Children's Cerner EMR into the patient's personally controlled health record, and data from the EMRs of our physician organization will also be automatically fed to the patient records," he says. The data won't be "pulled," but rather it will be automatically fed and then stored in Indivo, which is Children's Hospital's open source, internally developed architecture for integrating data from multiple sources.
Indivo is also the technology behind the personal health record system being deployed by Dossia consortium's members to their employees. Dossia is a group of employers, including Wal-Mart and Intel, who are funding Web-based personalized health records for workers.
"We're pushing new boundaries," said Nigrin about the "raw data," such as lab results, that will be fed into the personally controlled health records from the multiple EMR sources and points of care. "This is a brave new world," Nigrin adds.
MyChildren's also allows bill payment
Cincinnati Children's My Care Connection states its objective in the phrase anchored at the top left of the portal landing page: Growing Through Knowing. The full name is the My Care Connection Chronic Condition Clinical Portals at Cincinnati Children's Hospital Medical Center and "The portals are designed to improve the quality of patient care":
Portals support the ability for patients and parents to manage a child's condition and provide information parents need in order to be active, informed members of the health care team. My Care Connection also provides a secure way for patients and family members to ask non-urgent questions. Questions are answered by doctors, nurses or other care team members within one business day. Both questions and answers can only be viewed on My Care Connection.
The Cystic Fibrosis My Care Connection describes the purpose of the portal similarly, adding
The purpose of My Care Connection is to improve the quality of patient care. It includes accurate, up-to-date medical record information. The portal supports your ability to manage your child's condition. It provides information you need to be an active, informed member of our health care team.
The list of portal includes: "Lab results (Results can be viewed in text and in a graph); Height and weight data (with a graph); Lung function data (with a graph); Recent clinic visit dates; An area where you can ask non-urgent questions to specific members of the Cystic Fibrosis Care team. Your question will be answered by a caregiver within three business days." For urgent questions, readers are provided phone numbers to call.
My Care Connection is not intended to replace the personal relationships you have with your caregivers. It is intended to provide an additional resource to share information. You are still encouraged to communicate directly with your caregivers.
A Tour introduction lists the goals of the portal as
• To have patients and families become more involved in their treatment
• To give patient and families the information they need to be active, informed members of their health care team
• To make getting health information more convenient
You can view screen shots of the tabs in the My Care Connection portal which include
The tour also includes screenshots of all the features which are accessed by a tab navigation: first a clinic-specific tab with log of visits and information on labs specific to the decease and then Labs either by all labs, labs outside the normal range or most recent labs and option to download data to Excel; Test Results which shows a date and report name and lets you view the report; Medications and details for each medication such as name, dose, form, frequency, route and special instructions and clicking a column name sort the medications for example alphabetically; Email a Question has an archive of prior emails and a form with fields to select the clinic to whom addressed, add a subject line, enter the question and browse to attach up to 3 documents (pictures, school letters etc) to be sent with the question; Documents is a repository of all documents uploaded including those attached to email questions; Visits has tabs to see emergency, inpatient, and outpatient visits; and Patient Info apparently limited to demographic data (name, age, date of birth, address, and phone numbers).
While looking for clear descriptions of the features of Children's portal I came across a research paper titled Interactive Storytelling Environments: Coping with Cardiac Illness at Boston's Children's Hospital (1998) that shows innovative patient engagement some time ago, in the dog year cycles of technology.
This paper describes exploration of uses of a computational storytelling environment on the Cardiology Unit of the Children's Hospital in Boston during the summer of 1997. Young cardiac patients ranging from age 7 to 16 used the SAGE environment to tell personal stories and create interactive characters, as a way of coping with cardiac illness, hospitalizations, and invasive medical procedures. This pilot study is part of a larger collaborative effort between Children's Hospital and MERL - A Mitsubishi Electric Research Laboratory to develop a web-based application, the Experience Journal, to assist patients and their families in dealing with serious medical illness. The focus of the paper is on young patients' uses of SAGE, on SAGE's affordances in the context of the hospital, and on design recommendations for the development of future computational play kits.
Thoughtful House in Texas patient portal in Texas treats autism and includes a patient portal
Patient Portal and PHR Information
Developing Patient- and Family-Centered Peer Support Programs webinar
SickKids will host a webinar presented by the Institute for Family-Centered Care on Thursday March 18, 2010 from 1-2.30 EST.
This promises to be a best practises review of hospital support for well oriented and prepared parents to 'buddy' with other families in care.
Here is the webinar blurb - "Peer support has proven to be an effective means of helping patients, parents, and families cope with challenging situations and in becoming their own best advocates. Learn how to design a successful Peer Support Program with those you serve."
If you are interested in attending, please contact Janine Good by email at janine.good AT sickkids.ca to confirm attendance and the room number.
This promises to be a best practises review of hospital support for well oriented and prepared parents to 'buddy' with other families in care.
Here is the webinar blurb - "Peer support has proven to be an effective means of helping patients, parents, and families cope with challenging situations and in becoming their own best advocates. Learn how to design a successful Peer Support Program with those you serve."
If you are interested in attending, please contact Janine Good by email at janine.good AT sickkids.ca to confirm attendance and the room number.
Toronto's first child hospice part of the Don Jail lands redevelopment
When its Toronto's first paediatric hospice, 6 beds in an old mansion is a good start. Plans for Toronto's first hospice and respite centre for complex palliative children and teens will be presented Thursday. The expansion of the Governor's Mansion and revitalization of Gerrard and Broadview as a "unique campus of care" in Riverdale includes:
The focus on complex chronic care, linking of hospital and researchers, as well as the creation of an interdisciplinary family health team for a specific area of the city is very exciting. SickKids recently setup The Norman Saunders Complex Care Initiative which intensively supports a small, growing group of children with particularly complex health needs. In December 2009, three months after Bridgepoint raised over $400 million in bonds, SickKids launched a $200 million dollar unsecured debenture for their proposed Research Tower on nearby Bay St.
Anyone know if Bridgepoint is intended to become an alternative destination to SickKids for some of Canada's most complex care kids?
The new Bridgepoint Hospital – A state-of-the-art facility that has been designed to meet the specialized care needs of people with complex chronic disease (multiple lifelong illnesses) and disability.
The Bridgepoint Collaboratory for Research and Innovation – The new Hospital will bring together world-class clinical, education, and research talent. Together, they will identify new and innovative ways of preventing and managing complex chronic disease.
The Bridgepoint Family Health Team – Provides primary care services to people in the Riverdale community and across the Greater Toronto Area. Using an innovative model of care, family doctors, nurse practitioners, registered nurses, social workers and pharmacists work in partnership with patients.
The Bridgepoint Health Foundation – Supports the mission of Bridgepoint Health through charitable giving and community partnerships. Generous donors make it possible to develop new and enhanced patient care programs, create advanced training opportunities for the next generation of health care providers and undertake research to improve the prevention and management of complex chronic disease.
The focus on complex chronic care, linking of hospital and researchers, as well as the creation of an interdisciplinary family health team for a specific area of the city is very exciting. SickKids recently setup The Norman Saunders Complex Care Initiative which intensively supports a small, growing group of children with particularly complex health needs. In December 2009, three months after Bridgepoint raised over $400 million in bonds, SickKids launched a $200 million dollar unsecured debenture for their proposed Research Tower on nearby Bay St.
Anyone know if Bridgepoint is intended to become an alternative destination to SickKids for some of Canada's most complex care kids?
Dr Steven Schwartz of SickKids CCCU appointed new cardiovascular chair
Congratulations to Dr Steven Schwartz on his appointment as inaugural holder of The Norine Rose Chair in Cardiovascular Sciences. Dr Schwartz started at SickKids while Sasha was in CCCU and I first met him as he visited all the bedsides and introduced himself to families on the unit. Though he was not on Sasha's care team I have talked with Dr Schwartz several times about communication between staff and families in the ICU. So it was very encouraging to see him champion a new communication training module focused on resolving staff-family confrontation and the Sasha Bella Fund supported the launch of the program. I hope this new role offers Dr Schwartz more resources to continue evolving patient and family supports and particularly to strike an interprofessional group that can work with parent volunteers who experienced care delivery in the cardiac and paediatric intensive care units. I think the Labatt Family Heart Centre will benefit greatly from an advisory and clearing-house for patient and family-centred concerns encompassing both the ICU and Floor 4.
Toronto Public Library responds to family concerns over SickKids Reading Room budget cuts
Further to the January 27 post on library cuts to SickKids Reading Room, Matthew Church responded to parent concerns in a letter cced to SickKids Childrens's Council:
"while we will be reducing our financial committment, we will continue to support library service at the hospital. We are currently examining several options to do this, including training support for hospital volunteers (for which HSC is so well regarded), regularly scheduled library programs at the hospital provided by library staff, the provision of a deposit collection and continued financial support for the Reading Room collection."The full Toronto Public Library response identifies Anne Bailey, Director, Branch Librarys, as the contact for further information (abailey AT torontopubliclibrary.ca).Valerie McDonald responded:
Dear Mr. Church,
Thank you very much for your thoughtful reply to my concerns about the cuts to service at the Sick Kids reading room. I'm glad to hear that the library is committed to continuing to support the program with training for volunteers, a deposit collection and regularly scheduled programs by TPL staff. While I agree that Sick Kids has a very strong volunteer program, I don't believe that volunteers can ever replace the services of on-site, trained staff who have the expertise, experience and perspective to adjust programming to meet the changing needs of a very challenging population. In addition, the proposed changes do not address my concern that the TDSB does not have a mandate to serve pre-school children in the way that TPL does.
Those very young children represent a very significant proportion of patients at Sick Kids. However, I do appreciate that you are faced with difficult financial constraints.
Sincerely,
Valerie McDonald
2009 Project Database for Nursing Leadership Institute and Health Leaders Institute
The Nursing Leadership Institute & Health Leaders Institute 2009 Combined Project Database is an excellent resource listing hospital teams recently engaged in particular hospital and care research projects.
The database is organized into four sections: Care Delivery, Healthy Workplace, Business of Healthcare, and Personal/Professional/Team Development. The first section, Care Delivery, is further broken down into Models of Care, Care Pathways/Best Practices, Client/Patient-Centred Care, Introducing or Changing Clinical Program/Practice, Patient Flow, Community Development/Population Health.
If you put the following words into the PDF document search - Hospital for Sick Children, parent, palliative - here are some of the results. (staff, phone number ommitted and some typos corrected).
I could go on listing exciting projects all day but I thinks these 14 items out of the 900 on the list convey what a useful document this is. This project database is also a great place to identify projects that need research championship; the keywords "error", "disclosure", "adverse event" do not produce any results although it is an important issue and the manner that disclosure happens and potential involvement of parents in error review is being researched.
The database is organized into four sections: Care Delivery, Healthy Workplace, Business of Healthcare, and Personal/Professional/Team Development. The first section, Care Delivery, is further broken down into Models of Care, Care Pathways/Best Practices, Client/Patient-Centred Care, Introducing or Changing Clinical Program/Practice, Patient Flow, Community Development/Population Health.
If you put the following words into the PDF document search - Hospital for Sick Children, parent, palliative - here are some of the results. (staff, phone number ommitted and some typos corrected).
Family-centred developmentally supportive care mapping for infants and families in the NICU. Develop & implement a Family-Centred care map which incorporates best practice guidelines and system of evaluation, Hospital for Sick Children [project is supported by NICU's staff and parent Family Care Committee on which I participate]
Improving transitions for families with serious prenatal diagnoses to pediatric care. Document the transitions process of prenatally diagnosed infants from Mt Sinai to SickKids; Develop a tool for families to document & share experiences; Develop plan for disseminating info to providers. Hospital for Sick Children
Advance Care Planning (End of Life). Implement process hospital-wide for developing plans of care for children with life-threatening illness that reflect communication between healthcare professionals & families about wants, needs and desires for end of life care. Hospital for Sick Children
Addressing diversity in meeting child & family needs. Professional dev't program that addresses new standards of care; issues of RT diversity. Action focused program for interprofessional staff. Hospital for Sick Children
Opening the door to a natural death. Develop a reflective practice tool for health care professionals, addressing their values, attitudes and beliefs about end-of-life. Hamilton Health Sciences Centre
CCU Guidelines to support the delivery of quality end of life care. The development of guidelines to assist the team in providing quality end of life care to our ICU patients and their families. Guidelines may include withdrawal of care, family meetings, analgesia & sedation, organ & tissue donation. Guelph General Hospital
Engaging patients and families as part of the healthcare team. Developing guidelines for fully engaging patients and families as part of the healthcare team.
Riverview Health Centre
A tool to facilitate daily care of long-term hospitalized children in the CCU and PICU. The creation of a tool to facilitate consistent daily care for children who experiencelong-term hospitalization in the PICU & CCU. Hospital for Sick Children
Peer support for parents. Development of a parent peer support program. Hospital for Sick Children. [very happy to see this one and that I know all four of the practitioners on the list]
Taking care of those who care. Create an environment that provides coping resiliency for health care professionals, patients and parents at SickKids.
Hospital for Sick Children
Parental Presence during OR induction. A program that allows patients and the care-tiver to have/give support during induction in ALL surgeries. Hospital for Sick Children
Development of Palliative Care Unit. Transforming oncology / medicine unit of 30 beds by dividing unit into a medicine oncology unit and a palliative care unit.
Southlake Regional Health Centre
Family Centred Care (FCC) & Interprofessional Practice (IPP) Health Leadership Institute Evaluation Project. To evaluate through measurable outcomes, the impact of
participation in the HLI on advancing FCC & IPP. Hospital for Sick Children.
Implementation of a nurse led critical care response team (CCRT). Improved patient safety, quality, teamwork, and utilization of resources with a CCRT. Cambridge Memorial Hospital
I could go on listing exciting projects all day but I thinks these 14 items out of the 900 on the list convey what a useful document this is. This project database is also a great place to identify projects that need research championship; the keywords "error", "disclosure", "adverse event" do not produce any results although it is an important issue and the manner that disclosure happens and potential involvement of parents in error review is being researched.
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