Here is the interview with the Curenav founder, Crystal Christmas, available for you to watch on YouTube!! 😊🙏🎉 (I also figured out how to make the video quality better for the next interview coming up this Tuesday! 😉😁) Crystal spent a ton of time with us explaining her story of how Curenav came to be after her husband's death and how Curenav is geared specifically toward helping people with a history of cancer monitor their progress. Curenav helps people who are focusing on prevention as well, so whether or not you have had cancer, if you want to closely track your health then Curenav's free services are for you!! 😊 I told Crystal in this interview, and I believe this to be true, that everyone should in the world should sign up with them!!
Curenav helps with navigating the health journey and fills in the gaps where the medical system falls short, as doctors collect records but they're usually fragmented and incomplete and no one is doing this on the patient level. If Crystal had the wisdom she has today of how to identify and pay attention to trends and access to Curenav about 8 years ago, she believes without a doubt that her husband would still be here today. I also believe that he would be. ❤ Don't let anything get in the way of using her services if you will use them!!
I also have a Podcast now and you can listen to the interview here on Spotify!! 😁👏 Please share it with those who you think would benefit.
Show Notes Crystal Christmas 7/7/20 (You may find it beneficial to search for key terms or skim for highlights by looking at the time stamps with an "*.")
0:40 How Curenav came to be? A) They assist cancer patients in the battle, in remission and other patients w/other chronic conditions, even those looking for prevention… navigate their health journey to make it less stressful. At some point in near future, they’re expecting to go into clinical trial using the data they collect.
1:42 Her husband William – diagnosed with stage 4 esophageal cancer at 53 years old; his prognosis was 6 months. She quit her job to do all she could for this.
2:26 Couldn’t get the answers they needed from medical professionals; wanted formula for success; wanted to know what do we know/not know so we can ask better questions. William was doing well, had high quality of life, yet the 5 year survival rate of his cancer was 3%.
3:26 Applied principles of business to cancer – go in do deep dive – what’s wrong? Hire the right vendors, look at all different angles and turn it around. This brought incredible insight. Learned that the medical system is there to support you through pharmaceuticals, protocols, clinical studies; but there’s a big gap in translation between diagnosis and on day 1 you’re making decisions without being able to make educated decisions; usually the doctor only has 15 minutes with you. Went to the doctor more than anyone; insurance would pay for multiple appointments – they kept making appointments. Insurance never objected to that. Learned that each doctor comes w/his/her own set of experiences, exposure to the disease you’re dealing with. Every person is different and needs an individual approach. We typically treat cancer with one size fits all. They had trusted the doctors, but she believes doctors are not quipped to give every possible option.
6:12 Started writing things down, Excel charts and graphs – didn’t know lab values but …Stocks charts – peaks and valleys – you know what that means; didn’t have the skills to graph the charts but would hand draw the charts by hand.
*7:00 Chemo 1, 2, vacation – charted factors that changed; noticed trends emerging. Chemo stopped working. William’s cancer was in his liver, lungs, bones, esophagus at gastric junction. Looked at liver enzymes, kidney values – didn’t know what they meant but saw that they had a value, and an acronym that meant something. 11 months into journey was still doing well. However…
*7:53 Crystal knew his cancer was growing before his doctor did and the doctor changed his protocol; she realized at 11 months that she had more info than the medical system; began taking the data more seriously, though wasn’t sleeping and researched all night.
*8:07 Current Electronic Medical Record programs shortcomings – don’t aggregate all data; HIPAA restrictions
9:28 She tracked all his side effects from treatments: dry mouth, intestinal yeast infection
9:45 At Curenav they say, “What you can measure, you can track; what you can track, you can change.” Just like weight loss and exercise.
10:25 William teased her that he was her science experiment.
*10:48 – “If I told you everything that was possible we would be here for 2 weeks.” (dr. referring to side effects from treatments.) Decisions get made so quickly, doctors don’t have the time to sit and explain all the possibilities. “It’s not right, it’s not fair and somebody needs to change this.”
Unfortunately William passed away after 15 months from side effects of the treatments, which she could see two months ahead, marking the signs and symptoms. She carried around a suitcase of his information to doctor’s appointments. Given the information she has now there’s no doubt in her mind that she could have changed the outcome and extended his life.
11:50 After he passed, she pulled all his records together (carried everything together with her to the doctor’s appointments). The day you get the diagnosis it’s like the first day you enter medical school.
13:14 William had 2 really good doctors but they weren’t talking to each other. Both had been running labs.
*13:49 The most devastating moment after his diagnosis. There was a trend that his hemoglobin was dropping. His tumor was near a major artery, he had been losing blood for 2 years; had other signs such as bloating, stomach distress, fatigue – but they were attributed to his blood pressure medications. There’s no oncology expertise in the different areas of medicine. They’re looking to bring experts together to look for cancer rather than waiting until it’s obvious that a person has it.
“What are you going to do?” the doctor asked. “I’m going to change this for someone else.”
17:00 Curenav formed last year, have been focused on building and just released the Curenav app 7/6/20. Not available yet for Android but they’re working on it.
18:46 How God takes ashes and makes beauty out of it – bringing meaning to William’s death by bringing value to other people’s lives has been the most rewarding thing of her life. They accept donations of patients’ records whether the person needs help or not because there’s data and value in them for others. Curenav is about the cure navigator. They believe in a world without cancer; with enough data, there will be enough information; the research to date has been around the biology of cancer rather than the biology of the individual. The doctors keep the records but no one is doing it on the patient level. That’s where they’re filling the gap. Not without hardship or trials.
20:45 Have been able to help people get diagnosed with chronic diseases by pulling their records in and investigating what are the patterns; visualize the data and send to the doctor.
21:58 This week she started to see a legacy forming; they look at medical records differently than the medical world. She worked at a patient’s records may have been introduced in the womb. Another person newly diagnosed whose brother had the same type of cancer. Got his records and it’s informing her treatment course. She can hand this down to her children; they ask if a person would like their records passed along to their family members.
*24:45 Records go away after 5, 7 years or so.
25:55 Andrea introduces herself, a “previvor” with BRCA1 gene mutation; works with hereditary genetic cancer support groups as a patient advocate, also does cyber security; founded the nonprofit organization Lighthouse Collective, https://lightcollective.org/our-people/
27:53 If a doctor retires and doesn’t sell his practice or passes away then his records disappear. They take in a person’s story and all they remember about it and cross reference the records. The deceased family members could also give details not found in the medical records. HIPAA prevents data from being aggregated. William went to multiple doctors and cancer centers and got a different ID at each place. Medical records get sold off and information gets researched. Researchers don’t get the whole story. Only one person gets access to all the information – Crystal and Curenav. One of the gaps they fill is helping people be good stewards of their medical information.
31:47 You can put your appointment on the calendar feature – which they’re putting into testing on July 17.
32:34 Not under the rules of HIPAA because they’re not a medical provider but they follow those rules. They give people a participant ID so they can talk about a person and not expose their identity. (But a person can ask Curenav to contact their doctor and get their records. Curenav sends the records request to the doctor the following day and it gets put into a person’s file on Curenav.
35:01 What is the process for someone who is interested in Curenav? (31:31) – They want to know -what is your story? What are they trying to accomplish with Curenav? Set up calls with the participant; sign releases; someone starts gathering your records, review all their systems, write medical summary.
“The questions we ask determine the answers we get.” She asked one of William’s doctors, “If it were you, which one of these treatments would you do?” He said, “I wouldn’t do either of them.”
39:30 In the individual tracking, the participant inputs their ratings and Curenav sends the ratings to the doctor ahead of the appointment. (But people can choose their preferences and for example only have their info sent if there’s been a change or something bad has come up.)
39:57 New technology – hope to put appointments in your Curenav team and add home health company to provide caregiver services – to help people get rides to appointments, etc. Another group in Arizona is talking about using the app for
Think of the app as a capture tool – track exercise, symptoms like headaches, etc. Try to meet people where they are and what’s most important to them – whether it’s the tracking via the app or creating a summary
42:46 Her goal is to create a platform to store or link to great resources (like LotsaHelpingHands.com, etc.) Super high goal to make the world’s medical data accessible to everyone. Would like to make everyone’s life better and not have to go through what they went through.
43:35 Looking forward to the day then they can train artificial intelligence to predict when people will get cancer. 100% of her breast cancer participants had trauma in the 3-5 years prior to diagnosis. Our bodies are affected by our mental state – we produce more hormones and changes – we show up with a disease process later. The way our medical records work this kind of information isn’t tracked this way.
46:00 We don’t think about a doctor’s bedside manner and personality
46:25 An oncologist called her and asked her to help her pick a surgeon – she wanted to find someone who if they find cancer would like – needed help evaluating the surgeons. Crystal built a spreadsheet with education, experience, personality and health grades and available reviews, applied a scoring system to it and weighed the things more important to her. Does this a lot with diseases – esp unspecified diseases and will score based on their list of symptoms vs. symptoms in different diseases – to go to doctor and rule out diagnoses (not offered to everyone but for some can do this) – helped someone get diagnosed with Lyme disease. The data and the people will tell us what direction to go in.
49:33 How they help people get diagnosed? Specialists have a limited amount of time and aren’t trained in oncology, so Curenav looks for patterns. A participant had a bad fall at a young age and has autoimmune issues – certain things showed up after the fall. In the process of eliminating diseases, it comes down to the patterns and the interview. A woman from Brazil, her father had died of Chagas disease (“kissing bug”) and at the time she started getting ill medical authorities said it couldn’t be passed from father to fetus but in the years passed they found out that it can be passed from husband to wife, passed genetically, and mom could be a carrier without symptoms and pass it to the baby.
52:16 Crystal waited a few days to go to urgent care for a suspected broken hand – slammed her hand against the root of a bush; radiologist said it was negative but sent her to an orthopedic doctor. The orthopedist thought it was a break in another bone, gave her another x ray and CT scan. There is a condition related to being punctured by thorns and can be associated with inflammation and joint pain. What does the data say? Are you having other issues? Here are the questions we would ask your doctor. “It’s amazing what you can find based on how you ask the question.” People have a life to live, and don’t need to be worrying – so Curenav steps in and becomes the worrier for them so they can get along with their lives.
*55:43 Are there any particular lab values people should look out for who are looking out for cancer? Anything that is changing steadily or dramatically (but doesn’t have to be dramatic – William’s lab values were within the normal range). Traditional approach is testing and seeing if a value falls within the normal range. Changes happen as we age but within a year or two years over 3-4 lab results, etc. – change is something we need to address. Could be genetic, an injury, an ulcer, or cancer. WBC increases and decreases with illnesses. People who present with blood cancers had a change in numbers over time but no one was monitoring it and
Unless you go to the same doctor every time with the same lab
Multiple perspectives brings you more information. Tells young people – let’s get your baseline! Look at where you are tomorrow, next week, next year. Why it’s important to have it all together in one place.
59:39 Her dream is a dream without cancer. One of the exciting things she’s looking forward to is the community within Curenav. To find people like them. William used to joke that he was in the “cancer club.” She didn’t like the term. They were looking for answers to cancer while they traveled. Would get infusions in different centers as they traveled and he had instant community because of what they had in common.
People with cancer value life more and relationships. Looking forward to building it into Curenav. It’s organic growth and looking forward to people telling her what they need. She was not
1:02:26 She said she’s not the one – there are 1000 reasons why she – every good Bible story is a person – it is her life’s calling and it’s not what she would have chosen but He who He calls, He equips.
*1:03:17 How would she have managed William’s health differently if she knew back then what she knows now? She believes he would not have progressed past stage 1. He had Barret’s esophagus for years before dx but they didn’t know that because he wasn’t at the age when they’d do preventive screening – more likely to get esophageal cancer. At the end of dinner with her dad he asked “Where are the Rolaids?” William had been taking Rolaids all the time before his diagnosis. Made her dad an appointment – you can get an appt with an oncologist and insurance will cover it and they can do testing to rule out cancer. Dr. made referral to gastroenterologist. The average cost of a scope is $2800 – which they had – that’s the test William could have had to pick up the condition way earlier. She would have been more engaged in his health. And she has no doubt that he’d still be here right now.
*1:07:26 How can people be praying for her? Here to serve so it’s hard to ask for things. Needs clarity for her to be able to hear God’s voice. They don’t charge for their services – they’ve gotten some investors who asked when she’s going to start charging and she said she can’t and has to figure out another way. There’s the work they do and also the company which needs money to survive. How do we create the revenue so we can serve more patients? For that path to open up and for things to become clear.
*1:09:24 Curenav.com to find her! At the end of the page is the contact form – can say you want to participate as a pilot participant. She gets all the emails but someone on the team will follow up and Crystal will eventually get to speak with them.
1:10:19 Gel’s questions (diagnosed more than 5 years ago). Had an uncle diagnosed two years before her diagnosis. His doctors would ask about his history but doctors didn’t spend much time reviewing his history. She re-told his story to every doctor. (Do you expect someone to remember all the details every time you meet a new doctor?) Flagged in her journal the abnormal test results. The doctor said “that’s too low for you” and she wrote down her goal. However, her lab value fell within the normal range. Started carrying around a flash drive and offered it to her doctors, especially when they said her info didn’t come up in their system. A lot of times, still, not all her doctors would do that for her. Her husband is very techy and he would open the file on his ipad and show the doctors the reports and images. Why don’t the doctors do that? Every 3 months there was blood work. Her hemoglobin was going down and she noted the trend. She has a spreadsheet of her medical history. Having all the records in one place looks more legit in an app than her flash drive which is why this is exciting!
Crystal: The app helps you track how you’re feeling. Roll out new features every two weeks to try to make it as useful as possible.
1:19:14 Q: What data are you gathering and in your app will participants be able to input their own data and could these include imaging, surgeries, etc.? Also, you could sell the app! A: The doctors have their idea of what’s important but at Curenav they get ALL the data because it’s all important. They extract the data band put structure to it. Say to each doctor, “give me everything you have.” List of procedures, conditions, general summary and then extract lab values. Look at all the blood work and input the data to create historical charts and graphs. There is some technology but it’s just coming along but they will be able to automate at some point. They store it in an archive. They become our flash drive. In the future in the app you’ll be able to pick it up through the app and people will be able to upload it to Curenav. Like a health cloud. The current configuration on the app – you do daily check ins – they send daily texts to encourage people to check in multiple times per day. Can add customized observations to rate them and add or subtract at any time to create visualizations (such as headache, etc.).
1:27:28 William was an executive and was under a lot of stress; Crystal has 44,000 emails. There’s a company that can determine a company’s morale based on emails. Willing to take his emails and give the sentiment analysis while he was well and while he was sick. Will map out his medical data and see if they could predict from his email.
*Target came out with the news that a girl was pregnant and sent her coupons in the mail with pregnancy items based on her credit card patterns. It turned out she was pregnant! *
1:30:00 If a child or grandchild’s pattern starts to look like yours, could you recognize or predict that something is coming that you had? She’ll be working on this until she’s 95. :D
1:31:31 If someone had asked William would you give your life to give benefit to others he would have done it without a heartbeat. This is the gift of his life having a meaning that she gets to carry on and help many people. There are many people – 4 year old granddaughter – was able to do a deep dive on it. You’re able to get your appointment faster! Because doctors wait for records. They had a summary for her granddaughter ready and they got a call back the same day for an appointment.
1:33:00 The greatest advice they got was to take a copy of every record and put it in a binder.
1:34:27 Arlene’s question: Do you believe that the lifestyle of a pre-cancer person should be investigated to determine how they have been living, what they have been eating, drinking, putting in their body that could cause a cancer? A: An analogy she uses (she is starting to have uncommon knowledge from talking to so many people with cancer) – cancer is like a petri dish. Imagine putting a mold spore in the dish – will the – depends on the medium, temp of the room, etc. There’s an emphasis in the world on genetics. Genetics has a role but it’s not as big of a deal as it gets talked about in the media – it’s a whole set of circumstances, a perfect storm – environment, lifestyle, diet, nutrition, personal genetic profile. Yes, lifestyle is important, there’s a hormaonal, genetic, environmental influence and all of that needs more study.
Arlene: her husband died of cancer and she knows that his cancer stemmed from his years of drinking. And he didn’t know he had cancer until 2 months before he died. So he was living with this cancer inside of him because of the drinking and of course the drinking kept him from having pain and discomfort until the bitter end. She really feels that a lot of the cancers that people end up having or getting, they’ve caused themselves because of poor diet, drinking, smoking, numerous things. She knows that her Lord has given us everything on earth to ingest if we only do it. But we’d rather ingest things that taste better and take away our stresses and things like that. And that’s when we come down with these things such as cancer.
*1:40:05 What Crystal sees most common in people who get well is their mindset. People who get sick it’s their mindset too – William used to say all the time, well one of us might get cancer some day so let’s enjoy ourselves now. She was floored because that was the thing that he hyper focused on all the time. She’s heard “everything in moderation” – if you slam on the breaks and drive 100mph you’ll wear out your car quicker – same with our bodies.
1:43:00 We are the largest stakeholders in our health but the least involved in our health until we have a health crisis, then we start paying attention. What if we started paying attention sooner?
1:43:38 We should obey the Lord when He tells us to take care of our bodies. We have everything we need but we tend to lean toward whatever makes us feel good, taste good and not eat and drink the right things so we are to blame.
Crystal: We are a work in progress and some are more aware than others.
Arlene: I have to pray to the Lord, “Lord, You know what’s wrong. Help me to do what’s right.”
1:45:22 Cort Davies special guest to close us out for the night!