We understand that you, as a patient, may have questions or would like to know more about possibly participating in ARCH. The most frequently asked questions are given below. If you cannot find the answer you’re looking for, mail us on firstname.lastname@example.org. Other questions and answers on the whys and wherefores of ARCH are here.
What’s in it for me?
We hope to provide faster diagnosis and treatment, better information and direct contact with attending practitioners.
What is expected of me if I take part?
You can discuss whether participating in ARCH would be worthwhile for you with your specialist. If you jointly decide that you can take part, the specialist will sign you up. After that, there are no obligations but we hope that you will use the ARCH checklist to help you prepare for consultations. And that you answer a short questionnaire about your health at least once a year. You can complete the questionnaire on your smartphone, tablet or computer and we will use the information to ascertain if ARCH really is having a positive effect on your wellbeing and health.
Who decides if I can participate in ARCH?
You discuss with your specialist whether participating in ARCH would be worthwhile for you. If you jointly decide that you could take part, your specialist will sign you up.
What does ARCH cost?
It doesn’t cost anything to use ARCH. Our aim is for ARCH to become a part of our existing system of care.
Is participation in ARCH voluntary?
As with any health care project, including innovative care projects or scientific studies, the patient always has the right to choose to participate or not. Before completing registration, you will receive all the necessary information, be asked if you have understood the information and then asked to sign to confirm your cooperation. This can of course only be on a voluntary basis.
Do I have to share my details?
We will ask for your consent to use your patient information when you first register with ARCH. This is done through a process of “informed consent” and with your consent, ARCH can then use your details. Only your own attending practitioner has access to your personal information. Other healthcare professionals only see coded information so it can never lead back you and your privacy remains guaranteed. A patient may at any time withdraw their consent for their details to be used.
Is my privacy guaranteed?
ARCH may only use your details if you consent to it. Your own attending practitioner has access to your personal information and other healthcare professionals only see coded information so it can never lead back you and your privacy remains guaranteed. A patient may at any time withdraw their consent for their details to be used.
Why is my condition not included in ARCH? I want to be able to use ARCH too.
ARCH focuses on those rare forms of arthritis known as systemic autoimmune diseases. We want to ensure and test that collaborating nationally through ARCH really works. If the model for exchanging data works successfully then it can be used at some point in the future for other rare forms of arthritis.
Where can I find more information about my condition?
The NVLE and ReumaNederland websites provide more information. Our research suggests that patients would like to have more information on their conditions. ARCH itself is not aiming to set up a point of information but has informed NVLE and ReumaNederland of the patients’ needs and they are working on the situation. Naturally we provide links on the ARCH website to these sources of information. Questions on your personal situation or pertaining to your particular condition should be discussed with your doctor.