Debi Willis on LinkedIn: We are thrilled to be a part of this. I will be heading up the use case… (2024)

I am so pleased to announce the launch of our new product website: MyResearchLink.com.When I was diagnosed with cancer years ago, I wanted 3 things: -To have all my electronic health data in one place. I wanted my own copy of all my records to look through them to see if there were any clues to when (or how) I got cancer.- To understand what researchers are doing and learning. I really believe data holds the answers to the development, treatment, and cure for diseases. Knowing this, I wanted to learn how to share my data and get insights from research. -To connect with another woman in my city who also had kidney cancer. I wanted to learn about her experience and have someone who I could talk to about what I was going through. I am so thrilled to say that we have now completed my second “want”! (The first was completed a few years ago with our MyLinks application, which won First Place in the ONC Consumer Data Aggregator Challenge.)We decided not to build my third “want”, but we are happy to connect and work with any groups who have that need available to patients. MyResearchLink truly empowers patients to be more connected and engaged with the research team. It also allows the flow of data from the patient’s EHR into the research EDC in a much faster, cost-effective, and more accurate way. Patients can answer questions, share PROs and adverse events quickly and easily. Working together, we can help to find cures faster!Amy Cramer MMCi, BSN,CPHQ Renee Smith Angela Unruh Joe Dustin Dave deBronkart Grace Cordovano, PhD, BCPA Craig Lipset HL7 Vulcan CodeX HL7 FHIR Accelerator

40

14 Comments

I am honored to have been invited to the USCDI+ Cancer Summit last week at the National Cancer Institute. There were so many dedicated and brilliant people gathered there. Our task was to identify opportunities and challenges related to data collection, interoperability, and standardsfor advancing cancer research through data exchange. As a cancer survivor and caregiver, I am thrilled to see this collaboration to ultimately bring an end to cancer. Thank you #ONC for making this happen. I am hoping there are many more opportunities to work together to fulfill the vision of improving cancer care through better data collection and data sharing. #interoperability #WorkingTogether #USCDI #CancerMoonshot #NCIMicky Tripathi Amy Cramer MMCi, BSN,CPHQ Shani Sampson @Su (Sutin) Chen Beverly Buckta, Sc.D. HL7 Vulcan HL7 Vulcan CodeX HL7 FHIR Accelerator Tim Virdee Cal Collins Mitra Rocca FDA

30

8 Comments

This is great! I look forward to working on this. It can have a tremendous impact on bringing cures and better care to patients faster. Thank you OSTP for doing this!

7

Thank you Karen Curtiss, BCPA! As a cancer survivor and caretaker of family members with terminal illness, I know how important it is to have our medical records all in one place, easily accessible and shareable. I’m really grateful that we have been blessed with the skillset and an amazing team to make this happen. Our goal and our heart is to continue making MyLinks better and better. For those who are not familiar with MyLinks, go to MyLinks.com to see what it’s all about. 💕

4

2 Comments

So proud of my team! Every milestone we cross is a reason to celebrate their hard work AND more access for you to your records. Gather your health records...it could save your life and the lives of your loved ones. MyLinks.com#FHIR #PatientEmpowerment #CareGiver #MedicalRecords

19

2 Comments

I’m enjoying the #DPHARM2023 conference in Boston. I especially enjoyed the panel moderated by Amy Cramer (Johnson & Johnson) with Jennifer Roberts (ARPA-H), Brian Anderson (Mitre), and Grail Sipes (OSTP) speaking about evolving clinical trials infrastructure for more efficient clinical trials and better emergency response. A RockStar panel! Amy Cramer MMCi, BSN,CPHQ Grail Sipes Brian Anderson, MD

15

2 Comments

"Empowered patients can contribute"... 4 little words, but so powerful. Physicians are seeing thousands of patients and we can't expect them to know all the details about every patient. Patients and their caregivers WANT and NEED to know all the details so they can contribute and help. I am really encouraged with the ONC and CMS mandates to provide patients access to their data via FHIR APIs. They also get it..."Knowledge itself is power". This is exactly why we created MyLinks.com. You can gather your health data from over 55,800 locations into your own "mini EHR". Dig through the details. You might find something your current care provider (or you) did not know. Get your data, get empowered!

7

Joe Dustin Take a look at MyLinks.com. This is exactly what we do. We’re connected to over 55,000 healthcare locations where patients can download, aggregate, and share their data. They have their own “mini EHR” that is available to them via any web enabled device. Patients can also answer pre-screening questions to determine eligibility, and respond to questionnaires throughout the trial, including adverse event reporting. MyLinks is 21 CFR Part 11 Compliant. The number of clinic locations is growing as more orgs get their FHIR API available to consumer applications. As a cancer survivor and caretaker of my family with cancer and Alzheimer’s, I realized this was a desperate need for patients. Putting patients in the driver’s seat will change clinical trials as we know it. More correct and complete data faster…with the hopes of more efficient and faster discoveries to save lives.

3

3 Comments

This is REAL. Your health information...instantly...at your fingertips!Information IS POWER!#fhir #patientaccess #informationispower

4