Survey: doctoral thesis - Personal Health Record System Survey (international survey/anonymous)

Blogger's Note: although many patients/consumers may agree/disagree with the use of the term 'chronic' as it applies to cancer, it is one way to voice your opinions should you choose to do so
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Survey

PERSONAL HEALTH RECORD SYSTEM SURVEY

The following pages contain an anonymous questionnaire, which we invite you to complete.

This questionnaire was developed as part of a doctoral thesis at HEC Montréal on the following topic: "The role of personal health records in the improvement of healthcare services for individuals with chronic diseases".

Not only will your participation be greatly appreciated, but it may also be beneficial for improving healthcare services for individuals with chronic diseases.

Please answer the questions included in this questionnaire without hesitation, because generally, your first impressions best reflect your true opinions. There is no time limit for completing the questionnaire, although we have estimated that it should take about 30 to 45 minutes.

The information gathered is anonymous and shall remain strictly confidential. It will be used only to advance knowledge and for the dissemination of the overall results at academic or professional forums and thought publications. The information collected for this research project can be utilized in further studies about personal health records and chronic care.

You are completely free to refuse to participate in this project and you may decide to stop answering the questions at any time. If you do not want to answer to a particular question, simply stop answering this questionnaire, which will put an end to your participation to this study. Completing this questionnaire will be considered as your consent to participate in our research project.

If you have any questions about this research, please contact the senior researcher, Dr. Chekli, at the telephone number or email address indicated below.

The research ethics committee of HEC Montréal has determined that the collection of data linked to the present study meets the ethics standards for research involving human subjects. If you have any questions related to ethics, please contact the committee secretary at 1-514-340-7182 or at cer@hec.ca

Thank you very much for your participation.


Mohamed Chekli, MD, MSc eng.
Ph. D. Candidate - Administration
HEC Montréal
1-514-739-2502
mohamed.chekli@hec.ca

Albert Lejeune, PhD
Titular Professor
Université du Québec à Montréal
1-514-987-3000 (#4844)
lejeune.albert@uqam.ca

Francois Bellavance, PhD
Titular Professor
HEC Montréal
1-514-340-6485
francois.bellavance@hec.ca

Medscape: Oncologists Are Not Health Economists, Suggests Survey (U.S. & Canadian physician survey)

Oncologists Are Not Health Economists, Suggests Survey
 
 "Interestingly, responses to the clinical scenario did not significantly differ between American and Canadian oncologist."

Radiation Oncology A National Survey of the Availability of Intensity-Modulated Radiation Therapy and Stereotactic Radiosurgery in Canada

Blogger's Note: no references to 'ovarian'/'ovary'/'gyn'

Conclusions

The survey showed a growing adoption of IMRT and SRS in Canada, although the latter was available in less than half of responding centers. Barriers to implementation differed for IMRT compared to SRS. Enhancing human resources is an important consideration in the implementation of new RT technologies, due to the multidisciplinary nature of the planning and treatment process.

The complete article is available as a provisional PDF. The fully formatted PDF and HTML versions are in production. 

 

Vignette-Based Study of Ovarian Cancer Screening: Do U.S. Physicians Report Adhering to Evidence-Based Recommendations?

Abstract

"Background: No professional society or group recommends routine ovarian cancer screening, yet physicians' enthusiasm for several cancer screening tests before benefit has been proven suggests that some women may be exposed to potential harms.

Objective: To provide nationally representative estimates of physicians' reported nonadherence to recommendations against ovarian cancer screening.

Design: Cross-sectional survey of physicians offering women's primary care. The 12-page questionnaire contained a woman's annual examination vignette and questions about offers or orders for transvaginal ultrasonography (TVU) and cancer antigen 125 (CA-125).........."

FDA plans survey on direct-to-consumer drug ads -Modern Healthcare

By Melanie Evans

Posted: January 15, 2012 - 1:00 pm ET

The Food and Drug Administration announced plans to survey doctors, nurse practitioners and physician assistants on their awareness and perception of direct-to-consumer prescription drug advertising. The agency is seeking comment on a proposed survey of 2,000 healthcare professionals, according to a notice scheduled to appear in the Federal Register (PDF).

Patient-Reported Outcomes in Oncology - Center for Medical Technology Policy - survey feedback deadline Jan 30rh, 2012

On May 24, 2011, the project team presented their recommendations at the ISPOR16th Annual International Meeting.

The EGD is available for public comment. Click the following link to download, PRO EGD Final (35), and visit this survey by January 30, 2012 to provide feedback.

For more information, contact Merianne (Tiglao) Spencer.

link to the document - pdf file:

Recommendations for Incorporating Patient-Reported Outcomes into the Design of Clinical Trials in Adult Oncology

press release: OVARIAN CANCER (in) CANADA | Harris Decima survey shows Canadian women more aware of ovarian cancer (not so fast...)

Note: poorly written press release or;  was it the survey? the question/s ? the design?

Blogger's keypoints - in matters of full transparency:

* where are the results of the full survey? 

* demographics of repondents ?

the prior survey done in 2005 was not made available to the public either - yet funded with public/survivour funding

1) Randomized sampling = 1,010  in Canada
2) Canada's population est = 2011 - 34,409,066 

Blogger's Note: No explanation on the 51 years? exactly 51 years of age ?

"Other key study findings include:

• Awareness of ovarian cancer as a potentially fatal disease has increased (71% vs. 65%), particularly among women 51 years and older, who are at a greater risk of being diagnosed with ovarian cancer (71% vs. 58%)"

 

Complementary and alternative medicine dialogue lacking between patients, providers , April 13, 2011 News Release - National Institutes of Health (NIH)

The AARP/NCCAM survey was conducted by telephone interview in October 2010, with a random sample of 1,013 people aged 50 and older.
For a complete copy of the survey report, please visit http://nccam.nih.gov/news/camstats/2010/.

Research Advocacy Network: 2010 Survey of Advocates Providing Results to Participants in Biospecimen Studies

Contents
Introduction
Overview of Advocate Survey
Survey Results
Summary and Conclusions

"Introduction
If you provided a biospecimen for research
purposes, would you want to know the
results of your individual tests? Would you
want these results only if they had health
implications? Who would you want to
provide you with these results – your
doctor? A genetic counselor? Someone else?..."

Survey: GCF/University of Texas MD Anderson Cancer Center (follow-up for those without a recurrence)

 

The Gynecologic Cancer Foundation is cooperating with researchers at The University of Texas MD Anderson Cancer Center to learn your opinion about follow-up care after your initial treatment if you have not had a recurrence of your cancer.

This online survey has been approved by the MD Anderson Institutional Review Board and will take about 15 minutes of your time.

The Gynecologic Cancer Foundation does not share its mailing list and your contact information, including your e-mail address, will not be placed into any other database as a result of your participation in this survey.

Because cancer treatments continue to improve, the number of women surviving is increasing.  Researchers at MD Anderson are interested in learning about how patients with gynecologic cancers want to be followed after completing their treatments and your participation in this survey will assist them.

If you have any questions about the survey, please contact Dr. Matthew Schlumbrecht at MD Anderson at 713-563-4583 or mpschlumbrecht@mdanderson.org.

Instructions and consent information are included in the survey information.  To participate, please click here.

Caregiver Consultation 2010 Survey - Alberta Caregivers Association (see definition of 'caregiver')

The Alberta Caregivers Association is conducting a survey of caregivers throughout Alberta to learn about the issues they face. The main focus of the survey will be to capture the real experiences of caregivers so we can better understand the various challenges, barriers, and problems that exist from their points of view.



You can participate in the survey as a caregiver, a professional/service provider, a group of caregivers, or a member of the general public.

Before you begin the survey we need to know who you are responding as:

A caregiver is defined as a family member or friend who provides unpaid care for a loved one. This can be for someone in your home, in their own home, in an assisted living facility, in a group home, in a retirement community or otherwise. Common care tasks could include helping with chores, managing finances, arranging services or just visiting to see how they doing.

An example of a group of caregivers is a caregiver support group offered by an organization.

A professional or service provider is anyone who is paid to work with caregivers and/or the people who need caregiving.

Institutional financial conflicts of interest policies at Canadian academic health science centres: a national survey - full free access

Journal of Oncology Practice - Home Page - Survey of Cooperative Groups regarding NCI trials

Note: as of the timing of this post, these articles are freely available

Early Release Articles *NEW*

1) Timing Is Everything Zon
2) Challenges to National Cancer Institute–Supported Cooperative Group Clinical Trial Participation: An ASCO Survey of Cooperative Group Sites Baer et al

Invitation to European-based patient groups/patients to participate in an online survey on patient information - PatientView alerts and updates

Ovacome :News survey on cancer related fatigue (online) - survey is cancer related fatigue not specific to ovarian cancer

Can you help with research on cancer related fatigue?
"This study on cancer fatigue is being carried out by researchers in the School of Psychology, Trinity College Dublin. The study is funded by the Irish Cancer Society and the Irish Research Council for Science Engineering and Technology."

March 2010
Researchers in Trinity College Dublin are investigating the causes of cancer fatigue and the factors that contribute to the development of chronic fatigue in some cancer patients. The study is funded by the Irish Cancer Society and the IRCSET 'Embark Initiative'.
Who can participate?
Anyone who (a) has been treated for cancer or is currently being treated for cancer and (b) is experiencing fatigue.
What does participation involve?
Participation involves filling in a number of questionnaires about your fatigue, the factors you believe contribute to your fatigue, and the coping strategies you use to manage this symptom.
How can I participate?
If you would like to participate please complete this online questionnaire: http://www.surveymonkey.com/s/CancerFatigueStudy

If you would prefer to complete the questionnaire in hard copy or if you would like further information, please contact the researcher: Maria Pertl (Phone: 01 896 3083 / E-mail: pertlm@tcd.ie).

Open Poll - Pelvic Exams While Under Anesthesia

Poll is Open
please contribute your views (men & women)
Patients, Consumer and Health Care Professionals

Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

CO Early Release, published online ahead of print Apr 20 2009
Journal of Clinical Oncology, 10.1200/JCO.2008.20.4883


Primary Care Physicians' Views of Routine Follow-Up Care of Cancer Survivors

M. Elisabeth Del Giudice,* Eva Grunfeld, Bart J. Harvey, Eugenia Piliotis, and Sunil Verma
Department of Family and Community Medicine and Dalla Lana School of Public Health, University of Toronto; Sunnybrook Health Sciences Centre; Ontario Institute of Cancer Research and Cancer Care Ontario, Health Services Research Program; and Divisions of Hematology and Medical Oncology, Department of Medicine, Odette Cancer Centre, Toronto, Ontario, Canada.

* To whom correspondence should be addressed. E-mail: lisa.delgiudice@sunnybrook.ca

Purpose: Routine follow-up of adult cancer survivors is an important clinical and health service issue. Because of a lack of evidence supporting advantages of long-term follow-up care in oncology clinics, there is increasing interest for the locus of this care to be provided by primary care physicians (PCPs). However, current Canadian PCP views on this issue have been largely unknown.

Methods: A mail survey of a random sample of PCPs across Canada, stratified by region and proximity to urban centers, was conducted. Views on routine follow-up of adult cancer survivors and modalities to facilitate PCPs in providing this care were determined.

Results: A total of 330 PCPs responded (adjusted response rate, 51.7%). After completion of active treatment, PCPs were willing to assume exclusive responsibility for routine follow-up care after 2.4 ± 2.3 years had elapsed for prostate cancer, 2.6 ± 2.6 years for colorectal cancer, 2.8 ± 2.5 years for breast cancer, and 3.2 ± 2.7 years for lymphoma. PCPs already providing this care were willing to provide exclusive care sooner. The most useful modalities PCPs felt would assist them in assuming exclusive responsibility for follow-up cancer care were (1) a patient-specific letter from the specialist, (2) printed guidelines, (3) expedited routes of rereferral, and (4) expedited access to investigations for suspected recurrence.

Conclusion: With appropriate information and support in place, PCPs reported being willing to assume exclusive responsibility for the follow-up care of adult cancer survivors. Insights gained from this survey may ultimately help guide strategies in providing optimal care to these patients.