Participating in conferences and workshops Patient care and support • Webinar (existing): Literature (existing): Presenting at conferences Providing social support • • Sitting on organizing committees Providing financial support • • Providing clinical care support • Patient care and support Literature (existing): Patient organization development Providing social support Literature (existing): • Monitoring own clinical care Providing advice on develop patient organizations • • Webinar (existing): Fundraising to support further development of the • Providing clinical care support organization • Patient organization development Reimbursement decision-making Literature (existing): Literature (existing): Establishing patient organizations Submitting topics for evaluation • • Directly consulted during review process • Regulatory decision-making Membership on advisory/decision-making committee • Literature (existing): Preparing a patient submission • Reporting adverse events Literature (proposed): • Consulting in topic identification and selection • Reimbursement decision-making Assuring reimbursement of off-label drug use • Literature (existing): Submitting topics for evaluation • Providing information for preparation of evaluation • report Directly consulted during review process • Membership on advisory/decision-making committee • Providing feedback on evaluation report and/or • proposed recommendations Preparing a patient submission • Presenting views during committee meeting • Literature (proposed): Providing input on benefits and risks during topic • selection by horizon scanning producing organizations Providing input at the earliest stages of the HTA • process Presenting a summary of patient submissions to • reimbursement evaluation committees Consulting in the outlining of post-evaluation • research recommended by reimbursement Provide input into any re-assessments of benefits and • risks Routine clinical use Research Research Research
• Participating in conferences and workshops Webinar (existing): • Presenting at conferences • Sitting on organizing committees Patient care and support Literature (existing): • Providing social support • Monitoring own clinical care Webinar (existing): • Providing clinical care support Patient organization development Literature (existing): • Establishing patient organizations Regulatory decision-making Literature (existing): • Reporting adverse events Reimbursement decision-making Literature (existing): • Submitting topics for evaluation • Providing information for preparation of evaluation report • Directly consulted during review process • Membership on advisory/decision-making committee • Providing feedback on evaluation report and/or proposed recommendations • Preparing a patient submission • Presenting views during committee meeting Literature (proposed): • Providing input on benefits and risks during topic selection by horizon scanning producing organizations • Providing input at the earliest stages of the HTA process • Presenting a summary of patient submissions to reimbursement evaluation committees • Consulting in the outlining of post-evaluation research recommended by reimbursement • Provide input into any re-assessments of benefits and risks Patient care and support Literature (existing): • Providing social support • Providing financial support • Providing clinical care support Patient organization development Literature (existing): • Providing advice on develop patient organizations • Fundraising to support further development of the organization Reimbursement decision-making Literature (existing): • Submitting topics for evaluation • Directly consulted during review process • Membership on advisory/decision-making committee • Preparing a patient submission Literature (proposed): • Consulting in topic identification and selection • Assuring reimbursement of off-label drug use Routine clinical use Research Research Research
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