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Add your pledge and commit to a more meaningful patient engagement
Commit to more meaningful patient engagement in medicines development by listening, co-creating or communicating with your patients and share it with the world
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What is a concrete commitment?
Signing your pledge to patients means you will have to commit for a set of concrete commitments to patients, based on 3 pillars:
- Listening
- Co-creation
- Communication
They took The Pledge!
I commit to listening to patient and caregiver experiences and helping others from what I learn.
I commit to developing meaningful patient programming with our clients.
I commit to creating a culture where my team is encouraged to share patient experiences and participate in patient community activities.
I have been running our online platform for German-speaking leukemia patients for more than 14 years, and have helped to found and grow the CML Advocates Network for more than 10 years. I am supporting CML patients on a daily basis. This keeps me close to the real need of real patients, over and above being a cancer survivor myself now for 16 years...
I am committed to facilitate patient engagement in R&D by increasing the "system readiness" in patient organisations, academic groups and pharma to involve patient experts in a meaningful way.
I am involved in a number of educational activities and networks that work on patient information and patient empowerment, including EUPATI, PFMD, EURORDIS, Leukaemie-Online, CML Advocates Network, Acute Leukemia Advocates Network, WECAN and many more.
As the caregiver and advocate of one, I'll make sure our patient experience is relayed in the most articulated and constructive way since the margin for progress is massive
I will ask the next 5 patients I'm going to meet in the context of my profession as a manager patient affairs for a pharmaceutical company, what my company can do to improve her/his live most.
As a manager patient affairs, I will connect all German AZ teams of specific therapeutic areas with patients, to gain a better understanding of the patient perspective and patient needs, to develop better support materials and programs for patients and medical staff.
As a manager patient affairs, I will connect all German AZ teams of specific therapeutic areas with patients, to gain a better understanding of the patient perspective and patient needs, to develop better support materials and programs for patients and medical staff.
As a manager patient affairs, I will always response to any patient request within 10 working days.
As a Patient Centricity Excellence Director in the pharma industry, I will co-create with patients when building capability and training programs on how to best work with patients.
I will make sure i communicate the end results of the protocol simulation
I will listen to patient feedback on stigma associated with Acromegaly
All patients need to be included in RWE studies: real representativeness
As the head of Global Publications team, I will work with my team and stakeholders to identify how best we can ensure every publication has a meaningful and relevance to patients.
As a design strategist, I will co-create experiences, products, and strategies with patients. I will live up to the motto "nothing for me, without me".
As a medical writer, I will work to develop materials to support patient engagement strategies by pharmaceutical companies, involving patient review and co-creation of content wherever possible
I will partner with patients to ensure they shape their medicines and patient services of tomorrow, by ensuring myself and my team always include patient(s) input when developing solutions/services.
I will find someone who can act as a patient mentor and advise if what we think is a good idea actually addresses a need.
As Chair of the Patient and Public Involvement group at my local health trust, I will ask at least 1 patient representative 1 question at each meeting
I will work closely with PFMD patients and patient organisations members of PFMD, those of today and new ones, to understand what are the barriers they face
I will find a patient and spend time with them in the next 6 months to learn about how I can take their needs into consideration more in my role when I arrange meetings that involve patients.
Examples of commitments
Ready to commit?
Team leader/manager (General Manager or Line Function)
Clinical Research Associate / Manager / Physician
Drug Safety/Pharmacovigilance expert/officer/manager
Receptionist and any other company employee
Brand or product manager (marketing)
Medical Advisor/Manager (medical affairs)
Regulatory Expert/Manager
Purchasing manager
- I will arrange for a patient testimonial time slot in each of my quarterly team meetings
- I will invite my team members to share patient stories with me, and provide my own feedback on at least 1 of these per week/month
- I will attend the (annual) meeting of (tbd) patient group, and share my insights with my team
- When reviewing business plans and project proposals, I will specifically pay attention to how patient input has been leveraged to co-create the plan or proposal
- I will discuss my own Annual Plan with at least 2 patients
- I will share with my team my own Patient Pledge objectives, and explain that I also expect them to choose some, freely
- I will ask patient input to deeply understand their experience of participating in my/our study/ies, in particular regarding (select one or more) screening, informed consent, visit logistics, medication, study and/or visit information, CRF, questionnaire(s), diary, site team, blood and other lab tests…
- I will seek to understand (directly) from patients their experience behind missing or incomplete data
- I will seek to understand the study participation impact on the family of the patient
- I will work with (prospective or past) study participants to create patient support materials/information that they feel is needed and helpful
- I will stimulate the site staff to understand the study participant experience in the study at their site
- I will ensure a swift and understandable answer to any patient questions in the study, and also share these with the study team so that better/standard answers can be developed (with patients)
- I will personally talk/listen to at least 3 patients living with the disease(s) of the medication(s) I work for
- I will engage with patients to understand their lived experience of the top 3 adverse events reported to/via me
- For my next safety update report (or similar) I will work with at least 2 patients to ensure understandable language and to include information on the patient experience
- I will work with patients to understand which adverse events most matter to them and then study/report those in more depth
- I will seek feedback from patients reporting adverse events to me/my team about my/our own communication as we ask them for information
- I will make use patient-friendly language (on which I will actively and continuously seek feedback) in my communication to patients (specify: verbal or written, direct or indirect)
- I will join two in-house sessions where a patient comes in to testify
- I will identify a person living with one of my company’s diseases in my family or circle of friends and spend a few hours with her/him in the next 4 months
- I will attend a patient group meeting or conference in the next 6 months
- I will work with one team to give my lay language input into a document they are creating
- I will volunteer as a buddy for a patient visiting our company in the next 3 months
- I will understand, share and explain one patient information piece to one family member or friend
- I will give feedback on my personal experience to the two next physicians I visit as a patient
- I will either organise one or attend two in-house sessions where a patient living with the disease that I work for is coming to testify
- I will attend one patient group/association meeting in the disease(s) I work for
- I will watch at least 5 patient testimonials (YouTube etc) of people living with the disease(s) I work for. Note: when working internationally, repeat or adapt per country
- For my next XXX I will gain input from a patient before starting (and at least twice during) the work. <u>Note</u>: XXX = detail piece, or patient brochure or strategic update or booth set-up or communication plan or market research project
- I will request my advertising agency to work with a patient for our next project
- I will proactively share my plans/proposals for patient relevant projects (support programs, information piece) with at least 3 patient organizations
- I will attend a patient (group) meeting to personally do a Q A about our next patient relevant initiative
- I will share my next patient relevant initiative with at least the top 10% of my physician target audience, personally informing at least 6 of them
- I will (with appropriate pre-approvals) sit in on at least 5 consultation moments between a HCP and patients with the disease(s) I work for
- For my next YYY I will gain the input from at least one patient living with the disease(s) before starting (and at least twice during) the work. Note: YYY = training of field force, internal presentation, external presentation, lay summary, phase 4 study
- I will share a lay summary of 3 new articles in the disease I work for with at least 3 patient associations
- I will share my patient insights (about tbd) with my co-workers in marketing and clinical
- I will find out which patient testimonials/input has been provided to regulators in the disease(s) I work for
- I will seek, summarise and share patient feedback on the product labels (patient leaflets) that I am responsible for or contribute to
- For my next ZZZ I will gain the input from at least one patient living with the disease(s) before starting (and at least twice during) the work. Note: ZZZ = expert report, SmPC update, patient leaflet, discussion with authorities
- I will share the patient input that I am aware of with my colleagues in other life cycle stages for the same product (category)
- I will speak up to the importance of patient understanding at my next team meeting or external regulatory meeting
- I will seek patient input on their experience of working with our providers with whom they have contact
- I will challenge our (aspiring) vendors to share with me how they ensure patient input in their work
- I will inform my internal customers of the patient-centric strengths and weaknesses of our (aspiring) vendors
About us
Our mission is to transform the way
in which we understand, engage, and partner
with patients globally in the design
and development of research and medicines
by focusing on unmet patient needs.
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patientfocusedmedicine.org