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

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 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: Interviews with patients with advanced cancer—another step towards an international cancer pain classification system - European Palliative

Conclusions

Previously identified pain domains were confirmed to be relevant to the patients; however, the ranking differed from the experts’ ranking. Sleep disturbances may be added as a domain in a future classification system.

abstract: Different perspectives on communication quality and emotional functioning during routine oncology consultations

Results

The patients’ ratings of communication quality differed significantly from those of both the physician and observer. Observer and physician scores did not differ significantly. Physicians rated emotional functioning as discussed more often than was reported from patient and observer perspectives.

Conclusion

The patients’ view of the quality of communication differed from that of the physician and observer. Whether emotional functioning was discussed or not was also perceived differently by patients, physicians, and observer.

Is it safe, is it tolerable? Why not ask the patients? - Editorial + NEJM link

"A thought-provoking perspective by oncologist Ethan Basch, published recently in the New England Journal of Medicine, highlighted the absence of any patient input into establishing a drug’s safety. This might seem surprising, given that distressing symptoms – which patients are best placed to report on – account for a large number of drug-related side-effects....cont'd

 NEJM:
The Missing Voice of Patients in Drug-Safety Reporting, by Ethan Basch, can be accessed at http://content.nejm.org/cgi/reprint/362/10/865.pdf 

Cancer patients' experiences of using complementary therapies: polarization and integration

media news: Symptoms have little value for early detection of ovarian cancer including editorial commentary

my response regarding Andy Pollack's patient views on the CA125 (prior to the science paper)

May 31st, 2009 submitted electronically:

The issue of ultimate survival benefit and the psychological impact of living with and dying with ovarian cancer are at odds with each other.

Ovarian cancer patients/caregivers, for the most part, understand the limitations of this only and less than effective monitoring/diagnostic tool. However, it is well established that the CA125 can forecast recurrent disease months in advance of current imaging tests (CT scans etc).

It is the psychological burden which is a mixed 'blessing' BUT it is the one thing which ovarian cancer patients hold onto because that is all that we have in the daily nanoseconds while dealing with ovarian cancer. It can be said and felt that some healthcare professionals are unable or unwilling to deal with the psychological impact of the CA125 due primarily from a time perspective (workload stresses).


In fact, until we have a better test for ovarian cancer, whether it is for screening high risk women or disease recurrence, this issue will never go away, irrespective of the science involved.

I believe that we need to say no to any further research regarding the CA125 because at this point we are simply regurgitating what is already know. It is important to move forward in the research and find sooner, rather than later, a test which will be more accurate for ovarian cancer. Illusive, but possible, if the coordinated and cooperative venues can be improved.

On a personal perspective, this will be my 10th year anniversary of disease-free/no recurrence clear cell ovarian cancer. This week I asked my family doctor (an exceptional physician) for a CA125 and even she raised her eyebrows at the request, but graciously proceeded with the requisition.

I consider myself well versed in the science of the CA125, but you see? It doesn't matter, the issue is personal, very personal.It is one of the burdens of the disease, assuming one survives ovarian cancer. Acknowledging the impact of the personal will relieve many science questions and management decisions.

Sandi Pniauskas