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Patient Engagement Begins with Respect

by John Moore | June 09, 2021

Health systems nationwide are setting themselves up for a patient privacy revolt. It doesn’t have to be this way; far from it. But their blundering, patronizing, holier-than-thou attitude regarding secondary uses of patient data is frankly infuriating.

Now, don’t get me wrong, I am a very strong advocate of using patient data for secondary research purposes. There is a massive amount of promise in that data to better understand both how diseases present in patients and what therapeutics may best treat these diseases, for specific patient types (cohorts).

For example, a relative of mine struggles with depression. It took two years of hunting and pecking through a wide range of various therapeutics to discover the one that worked best for him with a minimum of side effects. This relative suffered mightily until the right drug cocktail was identified.

Now, just imagine a future where a patient is matched with others with similar characteristics identified in their health data, from DNA to microbiome, with proven, effective therapeutic options for this patient cohort. No more hunting and pecking, no two years of suffering until the right cocktail is identified–what an advance in clinical care that would be!

I firmly believe that patients and consumers are supportive of sharing their health data (numerous surveys concur); but if – and only if – it advances clinical research and improves outcomes.

But Houston, We Have a Problem

Health systems by and large seem to believe that it is perfectly fine for them to share clinical data with whomever they choose. They see patient data as their data and do not need any approval from anyone, provided they meet HIPAA requirements.

They are correct on this point, but is it good policy to not inform their patients/customers of what they may wish to do with a patient’s health data? That is the million-dollar question.

However, against a backdrop of ever-increasing cybersecurity risks and rising consumer concerns regarding the privacy of their personal information, this laissez-faire attitude on the part of health systems may cause an enormous backlash. Customers could demand that health systems no longer share their data without expressed consent. Such a reaction could set back research several years or more. That would truly be tragic.

Why the Backlash?

Health systems are not–in any way, shape or form–trying to educate their patients and consumers at large on how they wish to use personal health information to advance care. Rather, they are caught red-handed as in the case of Ascension’s partnership with Google. Or worse yet, they send out a glowing press release on a partnership, in this case HCA and Google to the delight of investors, but do nothing to communicate their intent to their customers, their patients.

This is a shockingly tone-deaf and careless attitude. Talk about treating patients as second-class citizens. Sometimes I just cannot believe the immaturity of this industry in how they treat their customers.

What Can Be Done?

During a recent monthly support group I attend, one of the participants who receives care at an HCA facility was quite concerned to learn through the press that HCA would be sharing her personal health data with Google. She wondered what Google would do with her data; if she would begin receiving targeted ads, would her personal data be shared beyond the confines of Google. She was visibly upset and wondering what recourse she might have to preserve the privacy of her personal, health data.

With the knowledge I have accumulated on the industry over my 15 years of doing research on health IT, I was able to talk her off the proverbial cliff. Once I explained how her privacy would be protected (de-identified data) and how Google and HCA together hoped to develop better care protocols based on real world data and real-world evidence, she felt much better about the sharing of her data.

And that’s the point – time and time again, consumer surveys have shown that patients are willing to share their data, provided their privacy is protected and more importantly, that it is in the interest of advancing care.

But it should not be my role or that of another patient to explain this to a group of very knowledgeable consumers of health care. This is a role that health systems need to step up and take ownership of. If they fail to do so, the long-held trust in these institutions will falter. And even more importantly, research that leverages such data sets could be severely restricted. This last point would indeed be tragic for all, not just these institutions, but the delivery of care itself and ultimately the patient experience.

2 responses to “Patient Engagement Begins with Respect”

  1. Stephen says:

    Why not take it a step further and cut patients’ in on the money being exchanged for their own data? If my data is truly my property, I should be able to sell it as any other asset. A eBay for PHI would go a long way to a trust framework for patients. Unless it is NOT truly my data – whats the actual status on the ownership issue?

    • John Moore says:

      Stephen, thanks for chiming in. Yes, some do advocate for allowing patients to get a cut of the royalties, which may work, but unlikely any health systems will adopt such a policy. Their arrogance prevents such and personally believe only legislative action would make such happen.

      However, their are some third party companies that work on behalf of a patient to gather all of their data for free, they have partnerships with Life Science companies to use that data and do distributed a royalty back to patients. Ciitizen is doing this today – worth checking out.

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