7/9/18

Platforms of compassion ... Who cares?

I still do.  Even after this long hiatus sharing my POV.

With industry and legislative groups promoting patient stories as testimony for products they pitch, there is also a growing need to extend equity for patient participants in the industry.

The experiential skill sets patients provide make a meaningful difference in the quality of understanding patients feel when journeying through health challenges.  They may not be measurable in bio terms, but comfort and care is a legit path through tough diseases and suffering.

It is out of date and unethical to leverage the suffering of patients and their stories without changing underlying business models obstructing transformation in the health space. 

In other words, a patient's experience is not marketing or policy.  It is complementary medicine in and of itself.  Peer to peer sharing is a modality that, like clean air and water, should be a public utility for all. 

We've entered the third decade of online health information and are still 'splaining the benefits of narrative coherence, of health rights of passage, of the value of old fashioned community.

Health search tools once open and transparent are now driven entirely by ad markets and money words derived from the top 100 most popular health searches online.  Our health is literally at auction.

Why do I know this?  I was part of teams that built products to leverage and dovetail search traffic because that's where the metrics, the pageviews, the money was.  The goal was to surface independent POVs by weaving them into high value search terms that were "actionable" and relevant.

But sometimes it's cancer as clickbait online.

And while there is increasing pressure to reduce health spending across populations, the market continues to push decentralized health care delivery systems.  Reaching deeper into community markets, there remains a persistent pressure for hospitals to continue to fill beds, keep hospitals open and functioning as is.

Patients, Providers and Insurers still push for relevance and yet the status quo persists.  It's a beautiful Back Eddy of tidal forces in America's market-driven healthcare.

But we end users of digital health innovation are often left downstream as products promoting transactional ease release into the system.

With each upgrade it may feel as though one's own most private sense of health and welfare has been tweaked without our conscious opting in.  We are outraged to be left out while the same old conversations are recycled with lip-service to our needs.

Podcasts riffing on good ideas and innovation labs are not equitable health delivery systems; we need business model changes.

Perhaps you, like me, find yourself in perennial shock-absorber mode; asked to adapt to new releases with steep learning curves precisely in moments of crisis ...

As we await the Supreme Court nominee any moment this evening, let us be humble and respect the complexity of human life.  There is no longer a barrier to believing that life is precious AND it demands great resources.  Let's build an equitable platform of compassion; one that honors choice and necessity; universal freedom and local challenges.  Give children the right to life AND provide them health care, education, food security, and freedom from gun violence.

All life is valid.  All of it.

A tolerant approach to the majesty of diversity looks a lot like the kind of love we learn about in the world's great religions.