MPNRF is asking patients to provide personal experience and insights on two topics: Telehealth and Clinical Trials. If you are interested in assisting, please send an email to myMPN@mpnrf.org with the subject line “Telehealth and Clinical Trial Insights” with your response to the following:
- Are you a participant in a clinical trial or have you considered participation in 2020? If you are currently participating, have you experienced any interruptions to your treatments, appointments, other trial requirements? If you have considered participation, please provide details on factors you considered including the cost of participation (if any), travel required, the safety of trial location visits, availability of information about your trial, and dialogue, if any, with your health provider about the suitability of the trial.
- How often do you go to the hospital/trial site? How often do you have a telehealth appointment? If the medication is oral, have you had any difficulty receiving it by mail or at a pharmacy? If the medication is an infusion or other non-oral form, are you required to go to a trial site, or has an alternative accommodation been set up (i.e. medically trained individuals come to your home or access has been set up at a more convenient site)? At any point did you fear discontinuation of the trial by the sponsor or did you consider dropping out due to the inconvenience of the trial requirements?
- Has telehealth been a positive development for you, personally? Do you feel you have the same, less, or more access to your healthcare provider(s) since March 2020? Are you confident that you will get a response from your provider on a timely basis? Have you kept a consistent schedule of blood draws, transfusions, check-ups? Have you experienced any interruptions with your medications and, if so, how quickly was it resolved?
Any information on the above two topics would be greatly appreciated and the identities of respondents will not be shared.