Why accessing your medical records can make the difference in finding the right treatments and… | by Mark Rogers | Sep, 2021

Why accessing your medical records can make the difference in finding the right treatments and trials today, and advancing the cures for tomorrow.

Once initially diagnosed with colorectal cancer you will enter a sudden whirlwind of tests, scans and appointments with healthcare providers including surgeons and medical oncologists amongst others. For some this can be at the same hospital or but for others this can be at multiple hospitals and clinics.

Each of the healthcare providers you meet will create a record based on your tests and scans and the type of care you receive including laboratory blood tests, medical treatments, genetic and genomics test results, surgical biopsies, radiology scans, as well clinical notes added to your records by your healthcare team

Once the dust settles, sooner or later you may want to get a full picture of your medical records for yourself and perhaps also to consult another clinicians for a second opinion, or for enrollment in a clinical trial. Hence, you will need to bring together all the reports from each of the healthcare providers you met along your patient journey so far.

You may also have the opportunity to help cancer researchers to learn more about your disease to design downstream treatment options later on and also to help these medical researchers find the cures for tomorrow by sharing your anonymized medical record data with them.

Let’s spend a little time to explain how you can collect and share your medical records with medical researchers and healthcare providers.

Firstly, let’s discuss the benefits of sharing your medical records with cancer researchers.

Once you have obtained access to your records from the multiple healthcare providers, you are in a position to donate them to researchers who are studying your type of cancer.

It is surprising that even though colorectal cancer is a very common disease, there is often little known about clinical trials ongoing for cancer patients outside of the hospital you are being treated, as well as information how certain treatments could work based your tumor mutation profile, how long the cancer was there, and side effects information given in relation to the treatments is often limited to the main 2 or 3 side effects, but as you may find out there are many many more for each drug.

The reason for this is that the teams just dont have enough data on the disease, because most of these records are stored in the different healthcare provider databases, and they do not have enough tome to read though the massive amount medical research knowledge where a million new cancer research papers are published every year. This data is available but its locked inside different databases resulting in only 6% of it actually being analysed to provide insights to medical teams and patients.

In the US nearly 300,000 patients are diagnosed every year with colorectal cancer, in the EU its nearly 500,000, and globally its 1.8 million. 60% are male and 40% are female, and 10% are under the age of 50, and this number is rising.

Now imagine if we had access to even a fraction of the medical records from these patients, to understand how patients are responding to treatments, how certain patients may have a higher chance of severe side effects, or how certain mutations mean that a drug may in fact work but was otherwise thought not to work in particular tumor mutation.

This data is called ‘real-world evidence’ and it can aid in the discovery of new treatments and to help answer those difficult questions on your cancer. These insights can all be generated from your records and to enable this insights to be generated you need to get access to your medical records. This can then empower you to share your records to support the advancement of medical research in your disease area.

So what are the benefits to you of accessing your medical records?

  • Having this data all in one place means that first of all you can easily look into your data to find important information on your tumor type, treatment status, blood works, tumor mutations, and see how you are doing over your patient journey.
  • Once collected, you can then find clinical trials more easily whereby the eligibility requirements to enroll will require information from your records.
  • To access second opinions, you will be required to share your medical records so the healthcare provider can understand your health condition and treatments to date.
  • Healthcare providers may not keep your records permanent and so having your own permanent record means that you can access this information in the future.
  • Having the records at hand means that you can go over them after your appointments at your own pace to make sure you didn’t miss anything during important meetings.
  • In the case where you have a caregiver now or in the future, you can share your records with them and/or with your family members so they can understand your healthcare journey.
  • You may need to manage health insurance claims, tax returns or legal issues too, and having this data at hand means you can easily look back.
  • If you change healthcare providers they may need to repeat diagnostic tests again if they do not have access to the originals from your medical records.
  • You can always request your medical records from the different healthcare providers but if you need them fast it can be difficult as it can take 1–3 months to collect these records from each provider. as you need them.
  • Some facilities may charge a fee for paper copies of your records but online tools and apps such as Oncocore may collect this data for free on your behalf.

Today, healthcare providers do not easily share medical records between each other and so when the patient has access to these records all in one place it can help your care journey go more smoothly and quickly by enabling healthcare providers to make better decisions faster.

So who can help you collect, manage, analyze and share these medical records?

Today there are several new tools and apps which help you to access these records, organize them into one place, analyse them to provide you with personalized insights and share them with others.

For patients fighting colorectal cancer and those who have survived it, Oncocore is one of those tools. Oncocore is a free online analytics platform designed by colorectal cancer patients for colorectal cancer patients. It helps you to collect and manage your medical records from multiple providers by taking some of the pain out of the medical record request process and providing access to records and insights from these records that you may not have been able to obtain from your healthcare provider directly or via patient portals.

When you log in to Oncocore you create your own account, list the healthcare providers where you would like to access your medical records, and answer a short questionnaire on your patient journey so far.

From here, our system actually creates the medical record request automatically for you, and once the records are retrieved, you will be notified and they will appear in your account ready for review, download, printing and sharing.

While waiting on your records you will already receive insights based on your questionnaire on clinical trials, treatment and side effects insights as well as access to clinical experts in your region. These will be updated once your records are retrieved with additional information collected.

Through Oncocore’s partnerships with cancer researchers, you will also be able to share your anonymized records to support medical research.

Oncocore will never share your data without your express consent. Before you use Oncocore or other online tools please make sure to read the company’s privacy policies, and terms and conditions.

What types of data are contained in my medical records?

  • Information regarding your medical diagnosis, including the type and stage of the cancer.
  • Pathology, radiology and diagnostic reports, such as biopsy analysis, blood tests, and CT/MRI/PET scans.
  • Surgical reports, if you’ve undergone any surgical procedures.
  • Medical device ID cards for implants.
  • Treatment information including radiation, drug regimen, dosage, dates.
  • Clinical notes on your side effects to treatments.

In summary

Getting a permanent copy of your medical records from multiple healthcare providers can cumbersome, but it is well be worth using free online tools like Oncocore which can not only do the work for you but also provide new insights using your records that can help your next steps, such as finding clinical trials, treatment and side effects insights and access to clinicians for second opinions.

Once you have a permanent copy of your records, you can review your health information at your leisure while being empowered to share your health data with caregivers, healthcare providers, or cancer researchers.

Using online tools such as Oncocore can help streamline the process and reduce the work required to request, compile, and share records, as well as to find personalized insights to help you in your patient journey.

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