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Sync not Sink our data – we need more cancer patient agency in health data use.

Updated: Nov 9, 2022

Gilly Spurrier, MPNE and Melanome France

When my husband was diagnosed with Melanoma in 2008, I had a shocking warning from the local dermatologist: “if you stay here, he will be dead in less than a year”. I was incredulous that this was the status of our disease in a modern health system, but I needed to learn fast.

This began with assembling his pathology reports, blood tests, radiology reports, so I could know the type, risk and optimum management of his disease. Luckily, in France at the time, there was a general expectation that patients would bring external lab measurements and imaging results with them to the consultations with different specialities. This meant we travelled around with a fast-growing file of his records and data. While this expectation probably stemmed from a mistrust of the efficiency of electronic heath record sharing, there was also a sense of “your health, your responsibility”, which ultimately, even in the face of the prevalent “cult of the expert”, helped us to claim agency over his Melanoma and its management, despite us having no medical background.

This is part of my collection of my husband’s health records and the crude data we created from it. When he was diagnosed with metastatic Melanoma in 2012, Overall Survival (OS), was 6% in 5 years, there were no effective standard treatments, and the early phase clinical trials of two totally new classes of “promising” therapies, were just beginning. We needed to make critical decisions, but the uncertainty around the available data and scientific research was very high. Without really knowing whether all these records and analyses would ever be valuable or not, we gathered a continuous longitudinal data set over 14 years. It probably is more comprehensive than his official health records which were even not fully accessible for health professionals, being as it was, spread between regional hospital, specialist hospital, Community care, closed clinical trial registries and different countries. We took smartphone photographs whenever there were no electronic or paper records. We learned to source reliable scientific information : published Melanoma research, (clinical trial updates, conference reports, treatments used in other indications), analysed his results and rigorously questioned the clinical teams responsible for his care. We even used it to “extrapolate” to which arm of a clinical trial we were blindly randomised to - side effect profiles can be very telling indeed.

Almost no patient has the luxury of a “how to be a successful patient head-start”, and, while the knowledge often came later than when it would have been most useful, we steadily learned about the disease, how the healthcare system worked, the role of different medical specialities, drug research and development , the intricacies of drug regulation and approval, Health Technology Assessments and other factors determining access and adverse event management.

Why did we do this? It helps us to COPE - it helped us regain some control when there were no clear-cut scientific answers, and it gave us some agency in an otherwise overwhelming and frightening situation.

We naively didn’t pay much attention to what others did with this clinical information, or our tissue and blood samples. Desperate for treatment solutions, we willingly handed over tissue, data, personal details, while barely glancing at the informed consent, because there simply is no “free” consent when you are facing a deadly disease with few options. Until, as part of MPNE, we were contributing to the IMI project GetReal, a large European project with 29 participants, including the European Medicines Agency EMA, ZIN, HAS and NICE, the Dutch, French and British Health Technology Assessors (HTA) and numerous academic and industrial partners. The project was about evaluating whether certain Real World Health data (any data that doesn't come from a clinical trial)could contribute to decision-making in healthcare (e.g. for regulatory or HTA purposes), and Melanoma was a chosen pilot example*. The project required registry data for comparison, and so the project team applied to the Dutch, Italian and French registries for their Melanoma data sets. I sat at that table listening to the coordinators saying how all requests for data sets from the European national registries for Melanoma data had been refused (including my husband’s data set sitting in a French Registry), and that they had to pay hundreds of thousands of Euros to buy SEERS data from the US. I was stunned and angry. This was NOT in the spirit of what we believed the secondary use of my husband’s data was for: sitting idle in a registry, with others, wholly unrelated to our situation, deciding on what it could be used for.

It was a true eye-opener. Since then, I started to learn and articulate what I, and the patient community to which I belong, “feel” about how our own health data is used. We want it used for things useful to us and our community, but in a way that is respectful and effective.

This new era, of more respect for individual data demonstrated by our GDPR legislation, has forced all stakeholders to at least “think” about what patient data is, who “owns” it, who can use it and for what purpose. I began to think that the “data altruism” concept, so beloved of current data holders and users, didn’t really connect back to me. Before GDPR, the other vested interests in my health data had no obligation to respect it, or consider what I might want it used for (this is especially important in the case of precious tissue samples and genomic data). It is like opening the front door of your home for anyone to use as they please.

I have made progress in my thinking: The first step has to be having full, free access to my own complete health data set: to know what it looks like, where the gaps are, and then to be able to use it for whatever is useful and valuable to me, my family and my community. All the smartphone data we had collected/analysed over the 12 years of my husband’s Melanoma, came back to mind. If we had an accessible App that contained everything that is, or could have been, useful to us while trying to survive the Melanoma diagnosis, what would it look like?

Something like this....

First and foremost, it gives me full, convenient access to all my own Health records – scans, bloods, radiology reports, MDT meeting summaries (with terminology explained), all of it and all in one place. My profile links to my family history and even my own family members’ portals, where necessary, because we know that family history matters. As it operates in real-time, I see the results as soon as they come out, or, with a click, I could choose the short wait until I have contact with my HCP to discuss them, so that I don’t have this painful situation of second guessing, that simply because I haven’t seen results, it must mean bad news. Something that regularly tortures patients in the community.

Obviously, I know that all my health records are well collated and recorded, private by design, and all while being seamlessly added into my portal. Then, perhaps later, used as a clean, interoperable, anonymised data set into wider registries, that I know all about, with the confidence that what should be private is, and what I choose to share, for the improvement of healthcare services and health knowledge, still keeps me safe.

I am certain that there are no gaps or mistakes caused by expecting busy professionals having to adapt or double-entry data for different uses. I know who has looked at my records, so I know when I come in for my appointments that the team is ready for next steps. I have a way to communicate comments on my record in a way that doesn’t alter the clinical record, but allows me to register that I feel something is missing or confusing, or to forewarn my team that they need to explain or follow something up. I have a linked application for side effect reporting, whether on or off treatment, that passes through an effective Patient Reported Outcome severity triage process, which then triggers appropriate alerts to my team, which seamlessly results in tailored advice, an appointment or swift clinically actioned management.

If my data is useful for GDPR-compliant secondary use, it is politely explained first, and that, in sharing my data, I know where and how it will be used and by whom, such that the informed consent is just a formality. When I request that my data set be shared further afield, it is with technical ease, good-grace and cooperation. If I am not happy or change my mind, it is withdrawn. I am informed quickly of any changes or data breaches. I know that those charged with the use and control of my data are well trained, respectful and sufficiently monitored. With all secondary data use, I know what my anonymized data is being used for eg. National Epidemiology, Health system planning, Cancer registry, specific Research or similar.

If I am approached through my portal, or by researchers, for more specific data sharing as in a clinical or observational trial, then I will see regular research updates on the dedicated trial or research portals linked to mine – I can request to receive data back from any personal data analytics, that I consider relevant to my own decision making. This exchange process was clearly described in the original protocol design from the outset. My portal is linked to user-friendly symptom, side effect and safety reporting systems, using relevant CTCAEs and PROMs (Patient Reported Outcome Measures), and I will have actionable answers on how to manage it myself, or for some relevant action to be taken.

I have enough confidence in the quality of my data that I can choose to share it myself for research purposes in areas where there is a return on engagement for me, my community or, if I am feeling generous, to those that may not benefit me directly, but might help add to scientific knowledge. I want it recorded that I have contributed my data and who can use it, how, and for what purpose. And some nice little respectful analytics that will show me where my data has been used and where it is currently being used (this applies also to my tissue samples). I want to be able to commission my own data analytics where this is not done for me.

Sometimes, I may want my anonymised data to be linked safely back to me, if I ever need to be told about risks or new knowledge that affects my case, but the privacy by design setup secures the individual data elements, but doesn’t lock me, or those I give permission to, out.

Sadly, for now, there IS no comprehensive app, but just an idea of what I think is possible in the new era of my own health data management around a cancer diagnosis. We have health data wallets (if we can get the records out of hospitals/health systems) and lots of data gleaning apps, but none that have a sufficient value proposition for me. But I am working on it, and I would love to hear what good looks like for you in your own Health Portal App, because, of course, it will also be future-proofed and modular to add in whatever might come up as useful in the future, immaterial of our condition, individual needs, or health status.

The health data of Cancer patients needs to be synced with an appropriate infrastructure that must make the most of it for the individuals and the community. Up until now far too much of it is sunk in databases, registries and clinical trial mystery holes, where the right brains cannot use it. It will also finally make research truly patient-centric because researchers will HAVE to present a value proposition to patients, that is better than some vague promise of scientific progress – and this will increase the relevance and impact of research too.

Patients need data to sync across multiple sources to get to the solutions we so desperately need - not to sink without trace into numerous incompatible databases.

*The GetReal Project then became the GetReal Initiative and now the GetReal Institute, more information here

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