experience with Medicines Research? help make priority setting, patient involvement better! - Due Jul 31, 2018

[A Former User]

Hi friends,

If you have participated in research for developing or approving new medicines and technology, there is an international group that wants to hear from you!!! Tell them about your ideas for strengthening the patient voice.

Here is the LINK. Below is what's on the opening page of the survey with better formatting

I've got no stake in this. Just passing it on.

I've been impressed with the ethics awareness and sensitivity to profit bias and self-interest among those who sent me this information: the Health Technology Assessment International group (LINK).

I attended the HTAi conference in Vancouver this year, and was very impressed with their scepticism about Big Pharma (not prominent in the room) and the medical establishment (certainly in the room). There is great interest in genuine collaboration with patients on establishing strong ethical foundations for this important work.

So much risk from self-interest and profitability!!!!

Many of the academics at the conference received the patients' presence with great respect and endorsement. I hope you can contribute.

Best regards to you for all that you do,

Cheers,
Carolyn

"Survey to Find Out Stakeholders’ Needs and Expectations for Patient Engagement in the Medicines Research and Development Lifecycle"

Aim of the Survey
The aim of this survey is to understand the needs and expectations of people who are involved in medicine development and patient engagement, particularly during the following phases of the medicines lifecycle:
research priority setting (i.e. providing opinion, providing evidence and/or being part of a group that decides what is important to research);
design of clinical trials (i.e. designing protocols, discussing patient burden, discussing patient-related outcomes); and,
early discussions with regulators and Health Technology Assessment bodies (e.g. early discussions between industry, HTA agencies and regulators (and in some contexts with payers) to discuss developmental plans for a medicinal product and to ensure they meet the requirements).

It is part of a research project called PARADIGM: Patients Active in Research and Dialogues for an Improved Generation of Medicines. You can see more information about PARADIGM at http://imi-paradigm.eu. The data provided through this survey will be stored securely and processed by the PARADIGM team as part of the project; it will be deleted once the project is completed.

Our Definition of Patient Engagement
We define patient engagement as the effective and active collaboration of patients, patient advocates, patient representatives and/or carers in the processes and decisions within the medicines lifecycle, along with all other relevant stakeholders when appropriate.