當心血管疾?。ㄐ呐K病或中風)確診后,醫生會提供治療建議,但病人的決定是至關重要的。美國心臟協會(AHA)與 以病人為中心的成果研究所(PCORI)合作,網絡征集文章。你可以是患者,社區志愿者,家庭成員或任何人,只要你有這方面的親身經驗。根據你的情況來闡述患者的治療決策是怎樣做出的,例如:對壽命的影響,對生活質量的影響,費用,或其他?同時關心過程的完整性,時間,等等。。。
“請于2016年6月9日之前將稿件上傳到:https://www.innocentive.com/ar/workspace/challengeDetail?challenge=9933835“
THE CHALLENGE
Treatment of heart disease and stroke often requires patients and their families to make many decisions on how to move forward after a cardiac event. Specifically, AHA and PCORI are interested in learning about the “decisional dilemmas” you face – your insights will help guide future research to improve heart health. Based on the input from you and others in the patient and caregiver community, we will identify important concerns and use the perspectives to target research towards what matters most.
Despite multiple available treatment options that your physician may describe, you may not always know which option is right/best for you. Tell us about the most difficult decision that you or your family faced when evaluating treatment options for heart disease or stroke.
In addition, we would like to understand more about what you considered most important when making this choice or decision. Please pick your top three choices and tell us why they are important to you and your family:
Side effects of the treatment
Complexity of treatment plan
Difficulty in adhering to a treatment
Impact on my quality of life
Potential to prolong my life
Whether the best option for me is selected based on research of people similar to me (personal characteristics such as my age, race and gender)
Whether my family history and genetic makeup would influence the effectiveness of a given option
Whether a trusted source recommended a specific option
The financial impact of the options for me and my family
Other:________
Any submission should address the following Submission Requirements:
The submission can be from anyone (patient, caregiver, family member, or other) who has been involved, first-hand, in experiencing the decisions that were made/need to be made in the treatment of heart disease and stroke. The story should be personal in nature and not a general case.
The submission must be pertinent to the United States health care system. It should not be based on other country systems. Other systems can be used as examples, but all information must be directed at how it could influence the U.S system.
You must use the attached Submission Form.
THINGS TO AVOID
This Challenge is not meant to focus on complaints about your doctors/nurses or the health care system in general. Rather, the goal is to try to improve treatment based on your own, or a loved one’s, experiences. Please try to focus on the facts and the decision making process related to the treatment of heart disease and stroke.
This requires a personal case and story and the decision making must reflect personal experiences. A generalization of heart disease and stroke treatment will not be acceptable/considered. If you are a patient, write about the condition you experienced.
Project Criteria
Note: All submissions must be on the Submission Form attached to the Challenge. You can find it in the right hand column as you face the Detailed Description of the Challenge. The Submission Form includes some optional demographics data that the Seeker would like you to fill out as well as your response to the Challenge questions. You will just need to save the form, fill it out and upload it as your submission. You can add attachments to your submission if you wish, but you must use the Submission Form to be eligible for an award.
Submitted responses should include the information described in the Detailed Description of the Challenge, including:
A brief history leading up to important decisions that were made in the treatment of heart/vascular disease or stroke.
Each major decision should be described in detail and include:
Choices that were given and how they were explained to you.
The top three factors (provided above) that influenced your decision the most. Explain why and how they influenced your decision.
Discuss what information was helpful that was provided by your doctor and any information that might have been missing, if known.
Did you gather additional information from other “trusted sources” of information? What kind of information did you receive?
If you could change the way things were done, what would you do to improve your experience in the decision making process concerning the treatment of your heart/vascular disease or stroke?
It may be helpful in your response to keep in mind the decision(s) itself, the choices involved, and the considerations for those choices.
Format for submission:
You should fill out the Submission Form which has boxes for all your information above. You can add attachments, but your primary submission must be on the Submission Form to be eligible for an award. The total text of your submission (the part that you write on the Submission Form) should be ~ 1-3 pages long. Please do not add any title pages, headers, blank pages, etc.
The submission should not include any information that you may consider Intellectual Property and do not want to share.
Optional participation in providing demographic information with the submission: this information will be held by InnoCentive until after the close of the Challenge and then submitted to AHA and PCORI to help them understand what is most important to patients with similar characteristics/demographics in order to target research to the areas most important to patients and caregivers like you. It will not be used in determining awards.
AHA and PCORI may wish to speak with you at the conclusion of the Challenge to clarify and ask a few more questions. Please include a statement indicating your interest in this opportunity.
Review Criteria:
Submissions will be reviewed by a team of scientific professionals and patient representatives with expertise in heart/vascular disease and stroke. Submissions will be reviewed on:
Completeness of addressing the topic of heart/vascular disease and stroke treatment.
Discussion of influence factors on decision making.
Feasibility as a future research topic (note: Solver is not asked to submit a research plan).
Relevance to the decisions made and options available in the United States health care system.
This is an Ideation Challenge, which has the following unique features:
There is a guaranteed award. The total payout will be $10,000, awarded to a total of ten submitters, at $1,000 each. The winners will only be chosen from those that complete all requirements and deliverables properly as determined by AHA and PCORI. The pool will be among those submissions describing the themes that are ultimately chosen to inform the subsequent researcher-based Challenge.
Note: All submissions must be on the Submission Form attached to the Challenge. You can find it in the right hand column as you face this page. The Submission Form includes some optional demographics data that the Seeker would like you to fill out as well as your response to the Challenge questions. You will just need to save the form, fill it out and upload it as your submission. You can add attachments to your submission if you wish, but you must use the Submission Form to be eligible for an award.
Submission forwarding occurs during the Challenge. Since submissions will be forwarded to AHA and PCORI throughout the Challenge, please make sure you upload only a finished submission. You can submit an updated version of your submission only as a new submission. If you submit an updated version of your submission/response, please clearly indicate the new items and/or edits compared to your previous submission. This will allow AHA and PCORI to quickly find the new information and determine how it improves your submission.
You are not required to transfer exclusive intellectual property rights to AHA and PCORI. Rather, by submitting a response, you grant to AHA and PCORI a royalty-free, perpetual, and non-exclusive license to use any information included in this response.