Toronto Local Health Integrated Network (LHIN): Meeting with Patients: Their experiences and perspectives

Blogger's Note: patients views and opinions, not specific to any one particular disease but patients opinions and views of their healthcare system/s

                                         ~~~~~~~~~~~~~~
 Erella: 

"Just because I'm getting used to the symptoms doesn't mean things are okay."

Patient Destiny prepared this report summarizing
the findings of the December 7th ‘Meeting with
Patients’ in collaboration with the Toronto Central
LHIN. In January, Patient Destiny sent an initial report
to meeting participants which provided a complete
account of their comments and input. (newsletter - 6 patients views/opinions)

TCLHIN-PDR-ENG-web.pdf (application/pdf Object)

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Ontario Health Promotion (backgrounder) Meeting with Patients: Their Experiences and Perspectives Report

Ontario Health Promotion E-Bulletin, 20 April 2012 - OHPE Bulletin 750, Volume 2012, No. 750

Sent on Behalf of Camille Orridge, CEO, Toronto Central LHIN
Dear colleagues
There is growing understanding that involving patients, clients and caregivers as partners in their health care results in better health outcomes and a system that better serves us all.
We also know that there is often a divide between how health care is delivered and what patients and their families say they want.
Patient Destiny and the Toronto Central LHIN co-hosted a day with patients and caregivers who receive services in the Toronto Central LHIN on December 7, 2011.   The session brought together a cross-section of patients and caregivers to discuss their experiences, perspectives and ideas for improvement and change.
Participants talked about their fears, frustrations, gratitude and hopes.  Most of all, they offered inspiration and concrete ideas that will help us achieve a better health care experience for all.
This report Meeting with Patients: their experiences and perspectives  will help to inform health system planning in the Toronto Central LHIN, including the Toronto Central LHIN's 2012-14 Strategic Plan and health quality and equity initiatives.
We encourage you to incorporate the report into planning within your own sectors and organizations.  This report is relevant to all members of the health care system from administrators to health professionals to policy makers.  Please distribute it widely.
I would like to thank all of the individuals who participated in the Meeting with Patients and contributed to this report.  We would also like to recognize Patient Destiny for their vision and commitment to strengthening the patient's voice in health care.
Sincerely,
Camille Orridge
CEO, Toronto Central LHIN

abstract: Survival Duration among Patients with a Noncancer Diagnosis Admitted to a Palliative Care Unit: A Retrospective Study

Abstract 

Background: 

Palliative care unit (PCU) beds are a limited resource in Canada, so PCU admission is restricted to patients with a short prognosis. Anecdotally, PCUs further restrict admission of patients with noncancer diagnoses out of fear that they will "oversurvive" and reduce bed availability. This raises concerns that noncancer patients have unequal access to PCU resources.

Purpose/Methods: 

To clarify survival duration of patients with a noncancer diagnosis, we conducted a retrospective review of all admissions to four PCUs in Toronto, Canada, over a 1-year period. We measured associations between demographic data, prognosis, Palliative Performance Score (PPS), length of stay (LOS), and waiting time.

Results: 

We collected data for 1000 patients, of whom 21% had noncancer diagnoses. Noncancer patients were older, with shorter prognoses and lower PPS scores on admission. Noncancer patients had shorter LOS (14 versus 24, p<0.001) than cancer patients and a similar likelihood of being discharged alive to cancer patients. Noncancer patients had a trend to lower LOS across a broad range of demographic, diagnostic, prognostic, and PPS categories. Multivariable analysis showed that LOS was not associated with the diagnosis of cancer (p=0.36).

Discussion/Conclusion:
Noncancer patients have a shorter LOS than cancer patients and a similar likelihood of being discharged alive from a PCU than cancer patients, and the diagnosis of cancer did not correlate with survival in our study population. Our findings demonstrate that noncancer patients are not "oversurviving," and that referring physicians and PCUs should not reject or restrict noncancer referrals out of concern that these patients are having a detrimental impact on PCU bed availability.

Canadian Scientists Develops World’s Most Advanced Drug to Protect the Brain After a Stroke (PSD95 inhibitor)

“There is hope that this new drug could be used in conjunction with other treatments, such as thrombolytic agents or other means to restore blood flow to the brain, in order to further reduce the impact of stroke on patients,” said Dr. Tymianski. “These findings are extremely exciting and our next step is to confirm these results in a clinical trial.”

not yet recruiting: Integrated Molecular Profiling in Advanced Cancers Trial - breast, non-small cell lung, colorectal, ovarian, phase 1 (patients) - Full Text View - ClinicalTrials.gov UHN (Toronto)

 Advanced cancer

Advanced breast, non-small cell lung, colorectal and ovarian cancers; as well as patients who are phase I trial candidates

 

Purpose

Substantial progress has been made in the treatment of cancer through the use of targeted therapies, but what works for one patient might not work for another patient. Certain drugs are now being developed that target specific molecules in the body that are believed to be part of the disease.

Biomarkers are specific characteristics of the cancer that may help provide prognostic information (i.e. how well patients will be regardless of the treatments given) or help predict sensitivity or resistance to a specific treatment.

The study will collect archival tumor samples (previously collected biopsy or surgical tumor samples) to provide biomarker data about a patient's cancer, in order to help their physicians to identify which clinical trials of molecularly targeted therapies may be most appropriate for the patient in the future.

Integrated Molecular Profiling in Advanced Cancers Trial (IMPACT)

This study is not yet open for participant recruitment.

Verified on January 2012 by University Health Network, Toronto

First Received on January 4, 2012.   Last Updated on January 5, 2012   History of Changes

Sponsor:	University Health Network, Toronto
Collaborator:	Princess Margaret Hospital, Canada
Information provided by (Responsible Party):	University Health Network, Toronto
ClinicalTrials.gov Identifier:	NCT01505400

selected photos (ovarian cancer survivor participants)

Dr Yi Pan

UK artists Clare and Denise

Participant displays event poster

young participants

Participants

Kuwaiti patients, Canadian care: Hospital executives seek revenue in foreign lands - The Globe and Mail

Women's Health Matters Network: Women's College Hospital (Toronto) patient survey (n=1,000)

 Some background:
The new facility will include the Women’s College Research Institute (WCRI), making women’s health research a key focus.

‘Our research institute is one of the few in the world – and the only one in Canada – devoted to women’s health and innovations in ambulatory care,’ said Dr. Lorraine Lipscombe, an endocrinologist at Women’s College Hospital and a scientist at the WCRI who spoke at the event.

‘Our scientists ask questions that are not only unique to women’s lives, but that are specific to distinct communities of women.’


Selected results:
"Some notable results:

* Only 30 per cent of respondents said they felt empowered when dealing with health-care providers. A great many women had less positive feelings: 45 per cent said they felt isolated when visiting a hospital, 57 per cent said they felt afraid, 63 per cent felt frustrated and 76 per cent felt anxious.

* Sixty-five per cent of women felt they were treated like a number rather than a person, and 70 per cent felt the focus was on rushing them through their appointments and treatments rather than discussing their needs and circumstances.

* The vast majority – 88 per cent of respondents – said it was essential to approach health care holistically, treating the whole person rather than isolated body parts. However, less than half that number (43 per cent) felt that hospitals and health-care facilities actually achieved this.

* Most women prefer to remain in the community – and in their lives – while their conditions are treated. Ambulatory care – or outpatient treatment, as opposed to being admitted to hospital – was the preference of 90 per cent of respondents.

* A health-care facility that is knowledgeable about, sensitive to, and actively addresses diverse cultures was important to 80 per cent of respondents.

* More than 85 per cent of women feel women’s health issues should be a research priority for a health-care institution. However, only 56 per cent think institutions successfully keep women’s health at the forefront of research programs."

OHA - Event Details - epatients conference Sept 21st

Note: the conference fees would exclude most patients, epatients or otherwise

Presented by Ontario Hospital Association

Course name:	e-Patients: Changing the Health Care System in Real-Time
Course duration:	September 21, 2010 - September 21, 2010
Location:	Novotel Toronto Centre 45 The Esplanade Toronto, Ontario Canada
Course code:	EP380
	Download PDF Brochure Register Now

phase 11 - RO4929097 in Treating Patients With Recurrent and/or Metastatic Epithelial Ovarian Cancer, Fallopian Tube Cancer, or Primary Peritoneal Cancer - Full Text View - ClinicalTrials.gov (location: PMH Toronto)

This study is not yet open for participant recruitment.

Verified by National Cancer Institute (NCI), August 2010

Purpose

RATIONALE: RO4929097 may stop the growth of tumor cells by blocking some of the enzymes needed for cell growth.

PURPOSE: This phase II trial is studying the side effects and how well RO4929097 works in treating patients with recurrent and/or metastatic epithelial ovarian cancer, fallopian tube cancer, or primary peritoneal cancer.

e-Patients: Changing the Health Care System in Real-Time Tuesday, September 21, 2010 Toronto (Note: fees)

Note: conference fees which would exclude most patients/e-patients from attending

e-Patients: Changing the Health Care System in Real-Time
Tuesday, September 21, 2010
Novotel Toronto Centre
45 The Esplanade
Toronto, Ontario M5E 1W2

Registration
Registration will take place on Tuesday, September 21, 2010,
at 8:30am at the Novotel Toronto Centre, 45 The Esplanade,
Toronto.
Space is not guaranteed, unless payment is received
prior to the event.Registration FeeMember (OHA/OHPA/MOHLTC):
$495.00 + HST $64.35 = Total $559.35
Non-member:
$980.00 + HST $127.40 = Total $1107.40

Framework Needed for Research Ethics Review During Public Health Emergencies

Note: discussion with particular reference to SARS (2003).

blog author's opinion: the most interesting/important comment in the article might be the following, as below. The larger question is the resulting action.

"Provide guidance and education on the important differences between public health research and practice to foster consistency in application of the differences and on how to recognize when projects proposed during emergencies cross the line from practice to research."

OHA - Calendar of Event Details (Toronto) Redefining Patient Centred Care: What Does It Really Mean?

Ontario Hospital Association conference June 17th conference agenda

The Role of a Clinician-Led Reflective Interview on Improving Self-Efficacy in Breast Cancer Survivors: A Pilot Study

Toronto hospital goes global to understand cancer treatments - Healthcare in Canada - C-Health

"The research will target lung, prostate, breast, colorectal, gynecological as well as certain blood cancers."

Attitudes of the General Public Toward Alternative Consent Models. (Toronto)

Gynecological Pathology - Sunnybrook Health Sciences Centre (Odette Cancer Centre) Toronto