Get involved

Patient in Focus values your experiences and knowledge about life with a physical, psychological, or mental disability or as a relative.

You have the opportunity to get involved in English speaking patient engagement projects. 

We want your knowledge to be heard far and wide and therefore we give you a unique opportunity to participate in various projects – large and small.

The choice is yours and we will do everything in our power to ensure that you have the best experience.

Women’s Health – Survey

We are looking for women who use or have used birth control, who want to review it to ensure the tone of voice, readability and language of the leaflet is user-friendly and easy to understand. 

Read more here

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Seeking caregivers to heart failure patients for paid workshop and interview

Are you a caregiver to someone who suffers (or suffered) from heart failure? Would you like to share your experiences and perspectives that will help others in the same situation?

Read more here

Caregivers to cancer patients for interview and workshop

Are you a caregiver to a cancer patient? Do you want to share your experiences and perspectives and get paid for your time?

Read more here

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Seeking caregivers to cardio-renal (heart-kidney) patients for paid workshop and interview

Are you the caregiver to someone who suffers from heart and kidney disease? Do you want to be paid for your experience and perspectives as a caregiver?

Read more here

Seeking caregivers to blood clotting, stroke or heart attack patients

Are you a caregiver to someone taking anticoagulant medicines to prevent blood clotting, stokes and heart attacks? Do you want to help others while getting paid for your time and effort?

Read more here

  • Project name: Pompe disease (Rare disease)
  • Purpose: To share your patient journey so that new and better products and services can be developed to better support Pompe patients in the future.
  • Description: Participate in an online advisory board where things like your personal experiences, wishes for the future, various project ideas and more is discussed.
  • Your role: Tell your personal story with the disease, participate in group discussions, brainstorm new ideas and wishes for the future etc.
  • Location: Online 
  • Language: English 
  • Date: August 2022
  • Time: To be determined (TBD) 
  • Hours: 1 or 2 days 
  • Sex: Women and men
  • Age: All (children under 18 must participate with a parent or legal guardian) 
  • Criteria:
    • Have Pompe Disease or is a relative or caregiver to someone with this rare disease.
    • Ability to communicate in English is helpful but translators can assist when needed.
    • Be willing to share your patient journey, experiences, insights and discuss new ideas for the future
    • Live in Europe
  • Assistance: Guidelines or sparring possible with a mentor (who also is a patient)
  • Expenses: None 
  • Payment: Yes 
  • Join: If you wish to participate, please complete the form at the bottom of the page.
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  • Projekt navn: Global Oncology Patient Council
  • What: Participate in a patient council, which will be meeting online 3-4 over the course of 12 months. In addition, you will be given small ad hoc assignments (e.g., giving your feedback on a brochure or website). It is possible that the patient council will be extended at the end of the year.
  • Your role: Participate in the discussion, give the patient insights and share the patient perspective around life with cancer, use of cancer medicine and treatments, how to deal with the emotions of going through cancer or returning cancer etc. The meetings lasts approximately 2-3 hours each and the ad hoc assignments can last up to an hour each.
  • Pay: Yes (will be offered)
  • Place: Online  
  • Date: As soon as possible
  • Hours: 15-20 hours over a 12 month period
  • Language: English
  • Sex: Females and males
  • Age: 18 or older
  • Criteria:
    • Good english required
    • Cancer Patient Influencer on social medias (any cancer type is acceptable)
    • Knowledge of clinical development is a benefit but not a requirement
    • Residing in Europe or North America
    • Access to the internet and a headset with microphone
  • Assistance: Guidelines and questions and answers possible with a Patient in Focus mentor (who also is a patient)
  • Expenses: None 
  • Join: If you wish to participate, please complete the form at the bottom of the page.
  • Project name:
    Share your patient journey and experiences with the healthcare system
  • Purpose: To share your experiences with local healthcare systems where you receive/have received healthcare and treatment and share your personal patient journey. The information will provide health innovators and startups with valuable insights, that may lead to better and more effective healthcare solutions in the future.
  • Benefit of attending: Sharing your patient journey and experiences will give healthcare developers a better understanding of what you go through as a patient. You will have the opportunity to help shape the health innovators’ strategy, so that their innovations will be much more effective and useful for patients.
  • Description: Patient in Focus is teaming up with a health innovator backed by the European Union to create several webinars to address the difference in patient behavior, barriers, and successes as well as patient engagement styles in Europe vs. North America.

Patient in Focus will lead and facilitate the conversation live online with input from patients. Your role: Tell your personal story with the disease, participate in group discussions, brainstorm new ideas and wishes for the future etc. A webinar will last approximately 45 minutes. In addition, you will spend time on briefing meeting(s) and personal preparation.

  • Location: Online 
  • Language: English 
  • Date: November 2022
  • Time: To be determined (TBD) 
  • Hours: 1-2 hours
  • Sex: Women and men
  • Age: All (children under 18 must participate with a parent or legal guardian) 
  • Criteria:
    • Have To qualify you must be a patient (with any diagnosis), who currently or in the past have lived in Europe or North America and have received healthcare services and/or treatment in one or more countries.
    • t would be great if you have participated in patient engagement although it is not a requirement.
    • You must be willing to speak openly and honestly about your experiences as a patient and communicate your challenges and hopes for the future of healthcare.
    • 18 years or older
    • Proficient English skills
    • Have internet access, a headset with microphone
  • Assistance: Guidelines or sparring possible with a mentor (who also is a patient)
  • Expenses: None 
  • Payment: Not offered by the sponsor 
  • Join: If you wish to participate, please complete the form at the bottom of the page.
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  • Project name: Men with prostate cancer
  • What: Participate in a focus group around new treatment possibilities
  • Location: Germany
  • Date: August 2022  
  • Time: To be determined (TBD) 
  • Hours: 5 hours 
  • Sex: Men
  • Age: 18 or older
  • Criteria:
    • Have or have had prostate cancer (cancer in the prostate below your bladder).
    • Receiving or have received treatment for a minimum of 3 months.
    • Ability to communicate in English is helpful but translators can attend.
  • Your role: Participate in a focus group along with researchers, professionals and other patients to discuss treatment possibilities, tell your personal disease journey, give specific examples of good and bad experiences with treatment, evaluate informational material about prostate cancer and more.
  • Assistance: Guidelines or sparring possible with a mentor (who also is a patient)
  • Expenses: Covered 
  • Payment: Yes 
  • Join: If you wish to participate, please complete the form at the bottom of the page.

 

  • Project name: Non-Hodgkin Lymphoma
  • What: Patient interview recorded with sound and video for internal and external use.
  • Location: Online
  • Date: June 15, 16 or 17, 2022
  • Time: To be determined (TBD) 
  • Hours: 5 hours 
  • Sex: Men
  • Age: 18 or older
  • Criteria:
    • Has or have had non-Hodgkin Lymphoma (NHL), which is a form of cancer with uncontrollable growth of lymph tissues incl. lymphnotes, spleen, blood and bone marrow.
    • Must receive or has received treatment with chemotherapy, radiation, antibody treatment of stem cell transplantation in the past.
    • Must live and receive treatment in Europe.
    • Speak good English.
  • Your role: Participate in a patient interview where you will be asked about your medical journey, your treatment and your feelings around it all. You may be asked about other things like what your hopes are for treatment in the future and what you liked the least about your treatment etc.
  • Assistance: Guidelines or sparring possible with a Patient in Focus mentor (who also is a patient)
  • Expenses: None 
  • Payment: Yes 
  • Join: If you wish to participate, please complete the form at the bottom of the page.
  • Project name: Heart failure experience
  • What: Advisory board meeting where researchers, experts and professionals meet patients, who have survived heart failure. The discussion will evolve around the condition, medications and comorbidities.
  • Location: Online or in the Netherlands (pending on COVID-19)
  • Date: August 24, 2022 
  • Time: 8.00-17.00 Central European Time (CET) with breaks + an hour of preparation online. 
  • Hours: 10 hours 
  • Sex: Women and men
  • Age: 25 or older
  • Criteria:
    • Heart failure with preserved ejection fraction (HF/pEF) and currently receiving treatment.
    • The treatment must include a form of medication but can also include other kinds of treatments.
    • You are followed by a European doctor.
    • Prefer that you speak English, but it is not a requirement as we can have a translator attend with you
  • Your role: Participate in a meeting where professionals get to ask patients questions and start a debate. You can ask questions, bring up new ideas or suggestions etc. The meeting will spread across many topics including the HF/pEF condition, treatment, side effects, comorbidities and more.
  • Assistance: Guidelines or sparring possible with a mentor (who also is a patient)
  • Expenses: Covered 
  • Payment: Yes 
  • Join: If you wish to participate, please complete the form at the bottom of the page.
  • Project name:Join a MedTech bootcamp
    (Your input will make a difference for everyone)

  • Purpose: To share your thoughts on subjects like patient data, data donation, your views on sharing your medical data, how the health industry can better their interaction with patients, so you feel respected and what your expectations to this is.

    Your input will provide health innovators and startups with valuable insights and may lead to better and more effective healthcare solutions in the future for everyone.

  • Description: Patient in Focus is teaming up with a health innovator backed by the European Union to facilitate two events: 1) a live patient panel discussion and 2) a patient engagement workshop.

    The live patient panel discussion will occur at approx. 9:30 AM – 12:30 PM and will include a 15-minute coffee break.

    The patient workshop will occur at approx. 2:00 – 5:00 PM and will include a 15-minute coffee break.

    Both events will occur live in English on Friday, September 2, 2022, in Erlangen, Germany and you must be able to participate in person to apply.

    You will be attending the MedTech bootcamp events live in company with the bootcamp participants and consortium partners.

  • Your role: Sharing your unique patient experiences will give healthcare developers and startups a better understanding of what you as a patient go through so future health innovations will be much more effective and useful to patients.
  • Location:
    Schlossgarten 1, 91054 Erlangen, Bayern, Germany 
  • Language: English 
  • Date: September 2, 2022
  • Time: a day
  • Hours: 10-12 
  • Sex: Women and men
  • Age: All (Overunder 18) 
  • Criteria:
    • To qualify you must be a patient (with any diagnosis), who lives within two-hour from Erlangen, Germany.
    • You must be able to participate in the patient panel and the workshop. Approximately 10-12 hours in total including preparation.
    • It would be great if you have previously participated in patient engagement although it is not a requirement.
    • You must be willing to speak openly and honestly about your experiences as a patient and communicate your challenges and hopes for the future of healthcare.
    • Live in Germany
  • Assistance: Guidelines or sparring possible with a mentor (who also is a patient)
  • Expenses: None 
  • Payment: €150  

Patient engagement list

We hope you will fill out our patient engagement list for other projects we might have the opportunity to involve you in, whether you are a relative or patient.

Want to join?

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