BETA - How can I develop a survivorship care plan?

It's definitely something that you can do or even just say to your health care provider, listen, I'd really like to do a survivorship care plan. Maybe you could help do that with me. Could we schedule an appointment where we can make that the focus of our appointment? I think providers would likely embrace that. What is OncoLife? Full disclosure, I'm a big fan of the OncoLink tool, which is called OncoLife, since that's who I work for. OncoLife has been around for 12 years now. I think our last count was that we had had about 85,000 care plans completed with our tool in those years. We're pretty proud of that. Our tool is free and well-researched. We just finished a huge update to it, and that was a lot to go through cancer drugs and cancer treatments and all of that stuff to say what are the short and long-term side effects that people may have as a result of their treatment. And then, again, that advice for healthy living after cancer, as well as how to get psychosocial support. Maybe you're having a hard time adjusting to your life with cancer or you're having a lot of anxiety and depression or you're worried about fear of recurrence or you're active disease coming back. All of that is included in a survivorship care plan. And I know a lot of patients are like, oh, I'm not sure if I can do this on my own. And our tool, OncoLife, is actually really constructed for patients to be able to do it. They just need a little bit of information about the kind of treatments they receive and they are able to check that off. And then our logic in the technological world will build their plan based on the things that they have checked off there for them. So I don't want patients to feel discouraged that they don't understand the medical and they can't do it. About how long does it take to fill out the information in the survivorship care plan? I think a lot of that just sort of depends on the tech savviness of the user. And we totally understand that not everybody loves to use the computer. And so we encourage people just to take the time that they need. Our research shows that for a healthcare professional, it takes on average between four and five minutes to complete our questionnaire to create the survivorship care plan. And I would think for a patient it might take 10 to 15 minutes, but it's not a huge undertaking. It won't take 20 years and you don't have to like hard type in all of the drugs that you've received. What information should you sit at the computer with to make a plan? So I think if you have a treatment summary of the medications you receive, we don't ask for your doses. We really just ask for the names of the drugs that you've received or the surgeries you've had. And if you know what kind of radiation that you've had, whether it's traditional photon radiation or proton radiation or maybe you've had cyber knife, we do ask for that. And we have little boxes that have like an eye right by it so it will explain more about that in case you aren't quite sure. So if you just have that information, that's really all that you need. We do collect a little bit of demographic information, but no health protected information, which is HPI and that's something that's covered under HIPAA. So we collect your sex. We collect a little bit of demographic information, which has actually really yielded a lot of positive research for us at Oncolink, but nothing more than where you live in terms of state or province or country. We actually have a pretty decent group of folks who use our care plan outside of the United States, which is very exciting. And we also ask gender and race and that helps us and disease type. And that helps us to kind of look at who is doing survivorship care plans. Is it patients? Is it physicians or other health care providers? So we do have a lot of data on what disease types are getting the care plans more than others. And I will tell you that breast cancer patients get survivorship care plans at a much, much higher ratio than most other cancer diagnoses, which is sort of an interesting research finding. And then we are able to kind of control for various variables and look at the data that we get from the care plan. And like I said, we produce some actually really interesting research from that. And then we have a lot of data that's optional that's also included in terms of side effects that you may have had related to treatment, which also helps contribute to our research and survivorship. So that's really all you need to have gathered with you, not too much information. And if you know you want to sit down and do the care plan, you can also ask your provider at your next visit, could you just give me a little summary or printout of the medications so that I can do this care plan. And our care plan is built in that you also have the option to email it to your provider once you have completed it and it sends a PDF format to the provider, which they could then save to your electronic medical record. What is the link for the survivorship plan? www.oncolink.org. And our survivorship care plan is called Oncolife. And if you go to the Oncolink webpage, there is a button that you can press that will take you right to Oncolife. And it is reviewed, like I said, we just finished a major content update to the survivorship care plan and all of us that write that plan, we are all cancer care providers. So we are physicians, nurses, and social workers who have taken care of patients for I think about 100 years together, you know, total. So we also are really uniquely positioned to kind of know what it's like to care for cancer patients and I think we really put that into the product that we deliver for patients. We get it because we've been there and we've walked this journey with you for a really long time. So we're not medical writers, we're medical professionals and we think that really sets us apart from other tools that are out there. Every single cancer out there we have. If we don't, I would be surprised. We also have an unknown primary, so if you have a cancer of unknown primary, you can also check that off and we've done the research there. And that is also something that really sets our plan apart. Some other care plans really only focus on like the big cancers, breast, colon, lung, and have those care plans done, but we have every disease type. Who can use it? It is free of charge and yes, we are all Penn people, but like I said, it is used globally and all over the United States. Actually only about 6% of our users of OncoLink come from the Philadelphia area. So we have a pretty wide reach beyond our area and we encourage people to just, this is a resource, this is our mission, is to provide this information for patients and their families and so we really hope you'll take the time to do it and become engaged and educated and empowered to care for yourself.