We have some very exciting news about an advocacy project that we want to share with you….
Parathyroid Peeps is an Inspire community partner! Join us at ParathyroidPeeps
We are joining other foundations and communities on Inspire including the National Osteoporosis Foundation, American Lung Association & Lupus Foundation of America, among many others.
Who is Inspire? Inspire, with more than 100 national patient organization partnerships and over 1.5 million members, has created one of the largest platforms for patient engagement. Inspire is a community where patients are able to receive and provide support, share experiences and information. At the same time, Inspire provides the life science industry access to the true, authentic patient voice with the goal of accelerating medical progress.
As the mission of Parathyroid Peeps is to raise awareness and advocate for improvement in diagnosis and standards for surgical treatment, we believe Inspire provides a unique opportunity for our authentic patient voices to be heard! Learn more here.
Here is one example of how patients’ voices accelerated research in another community:
Inspire and the Hereditary Neuropathy Foundation(HNF) collaborated to grow the Charcot-Marie Tooth (CMT) community and accelerate medical research. HNF member discussions helped researchers understand pain as a major CMT symptom as well as the type of pain and how to develop related questions and answers that would be most relevant to the CMT community. Today, pain is recognized as a very important endpoint in CMT treatment and outcome measures in clinical trials.
PARATHYROID PEEPS COMMUNITY MEMBERS ON INSPIRE WILL VALUE…
- Patient-centric content on interesting topics related to primary hyperparathyroid disease.
- 24/7 professional monitoring by Inspire’s Moderators to help ensure a safe and pleasant experience in the on-line community.
- Content organized by categories so members can easily find threads that pertain to topics of interest.
- Scheduled special event Q & A’s with medical professionals and researchers.
- Opportunities to participate in surveys,interviews and small group engagements.
- Ability to join other communities within Inspires 100 national patient organization partnerships and communities. This is beneficial to those who suffer from more than one condition.
- Receiving and providing support to others going through similar experiences.
- Anonymity, if desired, to help alleviate fears about publicly sharing details of ones health journey online.
Privacy: Inspire encourages members to create user names that are unrelated to the patient’s actual name, and we do too. In any case, members maintain full control of how content is shared. We encourage you to carefully review Inspire’s privacy statement prior to joining to understand the differences in choosing how you will post: Public (web), Member(Inspire platform) or Inspire friends. Learn more here.
How is the public information that is shared in some Inspire communities potentially used?
1) Insights:Life science executives face mandates to include real world evidence and expand the role of patients in modernizing clinical trial design, determining new indications, creating outcomes measures that patients’ value and assessing treatment risks. Learn more here.
2) Research / Clinical Trial Recruitment: Nationwide, some three-quarters of clinical trials do not meet their enrollment timelines. Inspire helps link them to patients who are looking for opportunities to participate. Learn more here.
3) Engagement: Members may at times be invited to participate in surveys, interviews and small group engagements. Learn more here.
4) Promotions: Companies and organizations may market directly to a target audience. You may opt out of receiving any condition-specific promotions that may be presented to you based on your profile information and/or the communities you join. Learn more here
We are looking forward to connecting with you in our community where patients will support one another on their journeys. At the same time, if we patients allow a candid view into our health journeys to those who are working to improve patient experiences and outcomes, free from primary research or institutional bias, we may be able to contribute to moving conversations forward that matter to us. The possibility is exciting…