New cancer site combines social networking, research, and medical record keeping

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Anna Sobering, a senior journalism student at the University of Kansas, is an editorial summer intern for CURE.Patients and caregivers have a lot on their plates when dealing with a cancer diagnosis and its treatment. Easy tasks such as keeping track of appointments, medications, side effects, medical records, and updating friends and family, can be daunting for patients going through the physical and emotional stresses of cancer.The American Cancer Society recognized the cancer community should have a way to use available technology with the information the ACS provides that would satisfy the needs of those who are dealing with cancer. Len Lichtenfeld, MD, deputy chief medical officer at the American Cancer Society says, "We begin to realize, as we live in an information age, that we will need to have tools that take advantage of the technologies that are out there."As a result, the ACS launched Circle Of Sharing, a free social, organizational, and informational online resource tool for the cancer community.In the development of this site, the ACS understood it must meet the expectations of a public that routinely uses the advanced social networks already available to them online. Therefore, with the help of Microsoft HealthVault, a free, secure, and private health service, the ACS built the Circle Of Sharing to function as a community networking application combined with a system that stores electronic medical records and provides a personalized collection of credible research and resources from the ACS.In looking over the site, I've come to the conclusion that this tool could make the lives of those dealing with a cancer a lot easier. Instead of spending hours online researching and sifting through the vast amount of cancer information on the Web that could be unreliable or incorrect, Circle Of Sharing allows users to simply enter in information about their cancer and the site instantly provides them with personalized articles about their cancer diagnosis, treatment options, side effects, local resources, and support groups.Lichtenfeld says the convenience of this tool makes it an extraordinary online resource for cancer patients and caregivers. "Being able to put all medical information in one place and putting the patient in control, really puts this Circle Of Sharing on a higher level than most of the other services that are available to the cancer community," he says.Similar to an online social network, users can invite friends and family to become part of their 'Circle' to keep in contact with them or share updates regarding the status of their health. Similar to a Facebook page, users have profiles that they can customize and update. They can also choose to share any of the personalized information that is provided to them by the ACS with members of their Circle. To file their records in Circle Of Sharing, users will also need to create a Microsoft HealthVault account. Electronic medical records entered into Circle Of Sharing are stored in Microsoft HealthVault. Personal information entered in Circle Of Sharing is protected by the security and privacy enhancements put in place by Microsoft. According to Lichtenfeld, users should not fear the security of their medical records on Circle of Sharing. "Microsoft has gone to great lengths to make sure privacy and electronic medical records are protected," he says. Does Circle Of Sharing meet all the needs of the online cancer community?--Lichtenfeld says it's a step in the right direction.

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For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
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