Is open health a thing?
Part 2 exploring whether open ecosystems are creating the benefits we should expect
Quick recap: Globally, our core infrastructure systems are moving towards being digitised and along the way, they are making use of a technology called APIs, which are basically like the little rivets on the top of a lego brick, or like the empty spaces underneath a lego brick. So because this technology is like that, it means it can connect to other systems, or other systems can connect to it.
So if you had a lego brick that was "payment functionality", you could use the lego brick to connect to an online store and bam, you can make a payment direct from your bank account if you approve it, rather than use a credit or debit card where you might pay additional card fees, for example.
Throw your arms in the air if you like music
I always come back to Shazam as an example of how APIs can be used to faciulitate open ecosystems and allow you to co-create your own value. So if you get Shazam to listen to a song when you are in a restaurant (this is the second time I have used an example where I go to a restaurant, please send recommendations. For restaurants, not for new analogies), there are a lot of APIs happening behind the scene:
an API that takes the recording of the music that Shazam makes
an API that connects that sound recording to a music library to try and compare with what's in the library and find the name of the song
a couple of APIs will collect the record cover from an image library and show you that in a neat thumbnail
maybe other APIs will show things like concert tickets for where the artist(s) are performing next or an API is used to drop the youtube video of the song into the results screen.
But here's the more interesting part (and what I mean by we get to "co-create our own value in open ecosystems"): you then have a range of options like being able to add that song automatically to one of your playlists, preferably on Tidal cos who wants to support Spotify now that they pay a shit ton of money to the antitrans, antivaccine, racist, misogynist-promoting Joe Rogan? (By the way, quick aside here, if Spotify packaged up their discovery algorithms or the algorithm that groups your music into genres, if they were available as separate products via API plugins, I would be willing to pay for those products so I could plug them into my Tidal subscription, I just don't want to pay a monthly full subscription fee for a platform that is using its significant power to elevate voices like Joe Rogan. (OK, I get they need to appeal to a vast cross-section of users, but Spotify made the call that Joe Rogan's voice was worth millions more than other podcasters it pays on the platform so no, this isn't cancel culture, it's my money and I don't want to spend it supporting platforms that excessively overpay for those kind of toxic masculinity voices)).
Anyway, before I trap you in a nesting series of parentheses all the way down, let's get back to the Shazam example of an open ecosystem. So you hear a song, find out what the song is, see concert tickets, and can then do stuff with the song like save it to a playlist. Ideally, you could even import it into your DJ mix software if that's your thing and make your own remix of it or something, or who knows, maybe you could import it into Canva so you could use it as the background soundtrack for a social media videopost you are making. And APIs are the the tech that connects all of those things and makes that possible (oh, and there would be payment APIs involved so you can buy the concert tickets or own the song if you want to buy it and save it rather than just stream it, etc). OK, so now you are co-creating your own value. That's the idea of open ecosystems, which I think is pretty neat. I use this example because it makes sense to me as a person in the world rather than be about my business.
It's like the time Jason Derulo performed in Barcelona at a nightclub, not a full on concert but more like he sang the first quarter of some of his current hits at the time (this is like back in 2014, I need newer experiences) as like a nightclub guest and before he came on at 2 am or whatever the warmup DJs did this whole FM shock-jock type narration with "Jason's coming out soon, any minute now, who wants to hear Jason?" and then they would rev up the crowd with things like "Throw your arms in the air if you like music" and I would put my hand up cos I was like, yeah, sure, I like music. So that's why I use this example.
Except I can't really use the Shazam example anymore and here's why: Apple bought it. So now if you Shazam a song, ok, you can still see the youtube video and find out the track thanks to APIs. But that is the extent of the open ecosystem. You can open the song in Apple Music but you can't save it to a playlist in Spotify or Tidal, you can't find out where that band is performing and buy tickets, you can't get a copy of the lyrics to the song. So the open ecosystem potential is gone and you lose as a music lover because now instead of clicking to link the track to your playlist, you have to open your music streaming app and search for the song and the version you are hearing and then save it which you might not even end up doing. The musicians lose because they don't have this extra distribution channel to sell concert tickets and if you didn't save it to a playlist they don't get that tiny residual that Spotify offers them anyway for each listen and they don't get the royalty fee from a direct sale if it was connected to Bandcamp (not that that would probably work anymore now that the new owners of Bandcamp have sacked the half of its workforce that was part of a union).
Anyway, here is one of the last songs I Shazamed in a restaurant:
The story so far
Last edition, I went into some detail to talk about open banking and how if the world moves to open banking systems (which they most definitely are), then ideally that should mean more financial products, more opportunities for all of us to improve our financial wealth cos we have more tools that help us save, borrow, spend, and organise our money in a way that works for us rather than just the generic bank products that have exorbitant fees and don't really help us understand anything except that our balance is a bit lower than we expected.
But with the move to open banking, last edition I noted that we aren't really putting systems in place to see whether this is improving our lives or just re-establishing existing patterns of power imbalance and inequality. That comment last edition turned out to be not completely true the following day, when the UK released their Open Banking Impact Report, which I will discuss next edition along with how Consumer Reports in the US is building out assessments of fintech apps, when we look at our final part in this series, where hopefully I can bring all these threads together to discuss what we need to measure, and what we as individuals should be asking, and what media should be reporting, and what governments should be doing.
How health systems are reshaping to be open health ecosystems
This edition, we are going to look at the emerging open health ecosystem globally. There are two parts to this:
Digitisation and modernisation of health systems has happened over the past 10-15 years when (most) governments have invested in updating healthcare systems so that they are all digitised and along the way they introduced the idea of the Electronic Health Record or Electronic Medical Record (EHR or EMR, they mean the same thing but different people use different acronyms because it's hard to agree to standardise anything). This has all kind of worked, but I would say we are all still frustrated that it doesn't feel like it has actually reduced the number of forms we have to fill out where we repeat the same information and then when we see a doctor or health professional it's pretty clear they mostly haven't read any of those paper forms or our electronic record cos they haven't been typed into the system yet so we then have to re-explain what is happening. And quite often, this happens even if we are seeing the same doctor or going to the same clinic (where we see a different doctor each time we show up). And if you are a woman, especially over, say 50 years, (pretty much anywhere in the world) or if you are Black in the U.S., if you are Indigenous in Australia, or if you don't present as a cis-white heterosexual man pretty much anywhere in the world then it doesn't really matter what is in your EHR or on the paper form, you are going to have to struggle to be heard and listened to and have your health issue dealt with properly without having to convince your doctor that it isn't all in your head first. The digitisation has pretty much mostly occurred in a lot of high and middle income countries. (Not all of them, I have just completed a study on the digital health ecosystem context in the Western Balkans, and Kosovo in particular is still struggling with digitising electronic health records and other countries in that region are at around 70% digitised.)
Then, like with open banking where once banks have account information and payments functionality available as lego bricks, others can build new products, services, workflows, or feed AI tools on top of that, in digital health ecosystems, the data in everyone's electronic health record can be pulled via an API into a database, another API can anonymise and de-identify the data, and then external players can build new products, services, conduct research and analysis, and plan better by drawing on the APIs that pull the data from the EHR databases.
Banking and finance data is pretty personal and sensitive: if we didn't have regulations and security features in place then open banking would quickly turn into the crypto fraud that certainly doesn't leave us with any reason to be techno-optimistic (I can't help myself, it's a fascist document, not enough people are calling this out: Timnit Gebru1, Techcrunch, some Substack tech reporters like Dave Karpf have spoken out, NYT ran an opinion piece by Elizabeth Spiers but I haven't heard one tech leader from a large platform or from an impactful tech enterprise speak out about that piece-of-shit, entitled, self-aggrandising, fascist-leaning manifesto).
But open health is even more sensitive and personal. So the whole idea of an open health ecosystem needs to have serious safeguards across the whole system, it needs to ensure people feel confident about what is going on with their health data, who has access to it at any time, how sharing data benefits them, and they need to see those benefits starting directly in the doctor's office when they don't have to repeat information and are treated respectfully and listened to.
There is a lot of innovation going on, but it is still very early days yet. In Europe, we have some of the aspects of the health experience integrated: over the last few years it has been much easier to message with my doctor online and only book an appointment (via online scheduling) when needed, and then I go into the pharmacy and show a QR code or my public healthcare card and my prescription is there. Any analytics or test results aren't usually shared directly with me, some are included in my public health department health app as a PDF, so that data I can't log into any other system that I might want for a complete picture of my health and well-being. This would suck if I had, say, type-2 diabetes where I might want to plug my data analytics into a diabetes management app or even in to a fitness tracker. I do have high cholesterol, so it would be great to pull that data into my fitness/nutrition app and see whether what I am eating or how I exercise is impacting on my cholesterol levels. There are moves in this direction: Germany, for example, treats some of those diabetes management type apps as prescribed therapies, so if your doctor refers you to use one, I presume you get a free subscription and the app can charge the public health prescription service for the subscription fee, or however that is remunerated.
But let's stick with the type 2 diabetes example: so with an open health ecosystem, for example, you go to your doctor, and maybe they can pull up the data for all other people of the same gender, age, weight range, any other characteristics they think are important, and your treatment history, and then compare that with anyone else with those similar datapoints and out of that, see what new treatment is most effective with people with a similar history. It's all aggregated and de-identified, so it's not like your doctor is saying, "ooh, Jenny from down the block has lost a few kilos and she is the same age as you and she used to use Dianono like you're being prescribed at the moment but when she swapped to Estabularium her weight fluctation stabilised so I'll put you on what she's having." It's more like, "amongst all women of your age who have previously used Dianono, it's looking like Estabularium is a better option these days". It's kind of the start of personalised medicine. The next stage will be when you share your genomic data: that's happening for serious health issues, like rare cancers and so on, where they can now look at your genetic markers and assess whether a specific treatment option will work for you, and now it's going the other way around: biotech are tweaking the treatments they are creating to match specific genetic markers so the success factor for therapies increases.
So people are being encouraged to add their genomic data to biobanks so that there is the data available. It's also happening on a private level: 23&Me for example built up their initial use cases around family background and ethnic heritage, more as a talking point and interesting factoid, but people loved it. Over the last year or so, it has gotten more accurate as more non-white people have signed up so suddenly where it used to say "10% African we guess?" it can now say "7.3% Ghanaian, 2.7% Nigerian" type thing. The same is happening with biobanks but if we are moving to personalised medicine, this risks reintroducing health inequalities, in like a reverse Worldcoin-type way: personalised medicine works better for the white residents where there is a greater pool of data from those who have contributed and less data available for migrants in a country because, they were not encouraged to share their data in this way, and there are less biobanks in their countries of origin. High income countries aren't supporting the establishment of biobanks in other countries, so population data for some ethnicities is much more poorly collected, reducing the data avaialable for analysis in rich countries for their migrant citizens. (The same thing happened in the early HIV/AIDS epidemic: it was known that Asian people generally have different levels of medication dosage needs that White counterparts, same with women alonsgide gendered factors to the creation of effective medications, but clinical trials for new HIV/AIDS drugs often screened out women for eligibility, and were focused on high income countries with white gay populations. It never gets better: during the early COVID epidemic in New York, I was part of an advocacy effort led by Black Health that advocated for COVID data to be disaggregated by race and location, as testing sites and care centres were being set up in predominantly rich white neighborhoods, and once the data was disaggregated it became clear that that is not who was most impacted. )
Again, like with open banking, there isn't much debate or community discussion that I am seeing about this. There are reports, more of the nature of the 23&Me data breach news the other week, but it is a bit oh well, that happened. What are the implications for me? I presume here in Spain they have a biobank or genomic data collection agency, I don't know how it operates, or whether I am meant to add my data to it, or what the benefits for me or society would be if I did, or how it would get used.
That first level of open health is happening: online doctor scheduling, e-prescriptions available at the pharmacy, some data sharing between general practice and hospital and other healthcare providers for those with chronic disease management issues or acute care needs. There isn't so much yet where you could link your public analytics to your own apps like in open banking, although Denmark, Finland and a few other countries in Europe have built platforms where you could upload all of your data into the one platform, I'm unclear yet on the level of apps or digital services that would then be able to pull all of that off the platform and combine it and make recommendations in the same way a budgeting app does with your finances, if you consent to it. When I look at the fitness/nutrition tracker apps, there aren't any integrations available globally that would let me link to that kind of data store.
If that's where we are at with open banking and open health, how should these areas move forward if this is going to be the way our banking and the way our health systems are managed? When do we get to feel like we are participating? How do we find out what's next in a way that invites us in to participate? (For example, Europe is setting up a real world data and evidemce infrastructure, does the public know what that means?) How do we avoid our health data being used tech companies like Palantir that have a deal with the UK government? How do we agree for our data to be used for new research areas that we believe in but not for a free-for-all? How do we avoid getting Shazammed if a government decides to share data with, say, Google, would we be stuck with only being able to use services that Google would deem appropriate? Would we all have to use Android devices if we wanted to access health care apps? How do we consent to sharing our data at a level that has guardrails and is sensible to us without having to sit through those cookie and data sharing type toggle tools where we individually have to turn on or off hundreds of data sharing arrangements?
Next edition, I will wrap up with some of the ways the media and governments could be helping explain and prepare us for active participation in this new digital world. Then in the second half of November, we are going to look at AI. We have an awesome tech policy writer and futures thinker coming on board who will talk about how AI is impacting on open ecosystems. I can't wait to share her work with you.
but i’m not linking to Twitter