My lovely friend Susannah Fox thinks and writes extensively about peer-to-peer healthcare, as well as the plight of people with rare health conditions. In a recent article, she developed a framework for thinking about what conditions do and don’t get addressed to patients’ satisfaction (and her friends helped her render it as below):
Susannah asked for feedback about this framework and here’s mine – it’s not cynical enough; economics and open-mindedness (lack of prejudice?) are missing from the equation that fills the lower left quadrant of this chart.
It is pretty clear that “People in Power” – and who they are may vary in different situations – sometimes do not help because they do not know how. But there are also many situations, I would contend, where they do not help or don’t care to help because: 1) they do not believe it will be profitable for them; or, 2) they do not believe the conditions are “real problems” that warrant help and resources. Sadly, these characterizations explain the presence of too many of the items in that dreaded lower left quadrant, as well as some that are missing, such as certain autoimmune disorders and Lyme disease (pointed out in the comments to Susannah’s original post on this topic, found HERE.
For instance, we know that there are problems, such as menopause and childbirth injury, that have clear and available solutions to improve outcomes. However, these problems do not get addressed because they aren’t perceived as real problems because …you know…the presence of ovaries. We are finally seeing a little movement here as women themselves have sought to bring solutions to market for women’s health. Tired of sitting around waiting for male scientists and clinicians to serve them effectively, these entrepreneurial women are marching themselves up to the People in Power table and pulling these problems up above the mid-line of the chart. I point to companies like Gennev, Elektra Health, Bloomlife, Ovia Health, Wildflower, Tia Health, and others as those with strong women leaders who are making commercial solutions happen despite past conventional so-called-wisdom.
It is also pretty clear that many rare diseases go unaddressed (and companies seeking to address them go unfunded or are poorly funded) because there is no drug price tag in the world that could make up for the fact that there are only a handful of patients with the problem. I think of my friend Matt Wilsey at Grace Science, for instance, who was lucky enough to be able to self-fund an initiative to develop a drug for his daughter’s NGLY1 Deficiency. Thank goodness for that, because only 75 people on earth are known to have this ailment and, as a result, no major pharmaceutical company was going to invest to solve it.
And there are diseases that affect far more individuals, such as pediatric congenital heart defects, which can impact 1.3 million of the babies born each year. And yet, until recently, no one had built medical devices required to treat babies. Rather, doctors have been forced to create makeshift miniatures out of way-too-large adult devices and do so on the fly during surgery. Companies like Starlight Cardiovascular are trying to fix this, but they, like so many other pediatric medical companies, are not swarmed by venture capitalists who are very eager to fund companies that treat adult cardiovascular diseases. Similarly, it’s the US government and the Steven and Alexandra Cohen Foundation, working with Luminary Labs, not big diagnostics companies, that are investing in encouraging the development of diagnostic tests for Lyme disease, another that is often dismissed as “it’s just in your head” by physicians.
Anyway, my point is, there are companies in that lower left quadrant that definitely do meet the definition of “people in power do not know how to help.” Alzheimer’s and addiction are high on that list. But in both of those cases there is a hell of a lot of trying going on. Zillions of dollars are pouring into scientific and commercial efforts to serve those markets and patients, but no one has yet fully cracked the code. This is a lot different than what is happening around the conditions that have little to no money chasing their cures and/or conditions where few scientists and researchers are investing time and brain space because it’s just not worth it, either due to financial challenges or their own psychological ones.
I really like the idea of a framework to help characterize what the problems are that patients have and whether they are being addressed to their satisfaction (rather than to the satisfaction of those on the medical side). Sadly, it is not always the case that these concepts align, although I would say that the advent of more involvement of patients in study design and the growing emphasis on Patient Reported Outcomes is encouraging. Nevertheless, if we are going to have a perfect framework, it may have to be 3-dimensional to pick up all the reasons that belong in the lower left quadrant of Susannah’s construct – that quadrant needs its own subcategorical segments – something like this:
I know Susannah is eager to get more feedback on this concept overall, so please feel free to provide that here and I’ll pass it along, or put your comments directly on her site at: https://susannahfox.com/2021/09/08/whose-needs-are-not-met/
Thank you, Lisa! My dad was once told by a therapist that he was irrationally optimistic and I think I inherited that trait from him, so I appreciate the splash of what you call cynicism to wake me up to these insights. You’re awesome!!!
Everyone else reading: Please add your own hopes, wishes, observations, complaints about what you see in our current system. I’m eager to hear from as many people as possible.
Thanks Susannah, and thanks for being thought provoking too! L
There must be a drug to cure Susannah then!!
Matthew – I hope not! L
It is not just finding new treatments to meet patients’ needs; it is also about rooting out existing treatments that don’t work.
https://www.propublica.org/article/when-evidence-says-no-but-doctors-say-yes
Absolutely true Elaine. There is a massive mismatch between the treatments we do have and what actually gets used. Lisa
This is awesome Lisa! Pondering the ‘they choose not to acknowledge the problem’ issue – it feels like in certain cases there will be a lot of overlap, where the people in power:
a) do not believe the problem is “real” (such as chronic lyme, undiagnosed mysterious illness where patients are told it’s all in their head, etc.) …
b) even if they did believe there was a problem, they wouldn’t know what to do
c) even if they did know what to do, , if they couldn’t make sustainable money doing it, they wouldn’t act
So A, B and C all co-exist maybe…or there could be a certain flow from A to C. I don’t know how to visualize that! But your graph is a great place to start.
Thanks for the note Katie!
This points to an inherent problem in the for-profit healthcare innovation sector. Investors by definition must put profit over people to satisfy their limited partners (LPs). But we also have government and non-profit agencies funding innovation. Unfortunately, they often try to imitate investors and look for economically sustainable solutions, which eliminates certain innovations off the bat. At what point, and in which areas, do we flip the model on its head and establish innovation-funding criteria based on health results rather than economic sustainability. We do this for education, military and infrastructure spending, among others. Why not healthcare innovation?
Great question Nicolas. Although I would say that I don’t think we have put a high value on education or infrastructure spending given the state of those in the US. But a valid point in the abstract for sure. Lisa
Thanks for the discussion and models. There has to be a subset of the model that has the population affected and their relative power as well as immediate potential impact on the people in power. For example, when Ebola was thought to be a disease in Africa there were efforts to stop the spread but those doubled down when a case arrived in the US. This has been true with many other infectious diseases. There are many permutations on this including the role that racism, gender, and economic status plays.
Hi Mary, that makes so much sense. Lisa
Thank you. This made me go look up “cynicism” – “an inclination to believe that people are motivated purely by self-interest; skepticism” (Oxford), “cynical: believing that people are generally selfish and dishonest; selfish and dishonest in a way that shows no concern about treating other people fairly” (Merriam-Webster). Interesting that Oxford doesn’t include dishonesty.
I’d submit that your center swath (no apparent payback) might fill the whole quadrant, with swaths overlaid for the others: “No apparent payback, plus, I don’t even know what to do” and “No apparent payback, plus, who cares?” Of course “no payback” often equates to the common “where’s the business model?” but it can also be the rare disease problem (tiny market size: the nonsense mutations you cite, and so many others).
I love the insights I’ve learned so far from Susannah’s 2×2. My #1 inspiring takeaway so far from her latest path – amplified by your contribution here – is to rid ourselves of our dependency only on the usual investor pathway. AUTONOMY, enabled by access to tools and information. (The 1969 Whole Earth Catalog was subtitled “Access to Tools”; the 1994 Millennium Edition was “Access to Information.”)
Hi Dave, interesting – I’m going to ponder on that. Lisa
Lisa and Susannah,
Thanks for highlighting one of the many deficiencies in US healthcare delivery in spite of the price we collectively pay.
Many ills in the US healthcare delivery is rooted in complexities that even the most powerful operators are suffering from. These complexities evolved over decades and, sadly, until the delivery system is freed from them there will be major dissatisfaction and continued runaway costs. Innovations that operate along the the PPO or HMO delivery will maintain the status quo and only new delivery models have a chance of impacting many of these ills.
Hi Lisa and Susannah,
One underserved population you mention, post menopausal women, are also plagued by two more dimensions to the model:
1) Unwillingness on the part of the patients, themselves, to talk about it, so the proportion of people suffering is not well understood (and I include in that group that is suffering, the families of the people directly suffering from vulvovaginal atrophy and the like). If a patient doesn’t bring up the issue, the physicians (and everyone on up the chain) don’t know it’s happening or to what extent.
2) The gold standard treatment that is out there (hormones) allows those who tend toward the “choose not to acknowledge the problem” side of the chart to dust their hands together and say, “done.” The reality is that many suffering are on hormone suppressants or are at risk for cancer or are simply unwilling to disregard the black box warning that comes with hormone therapy. So the existence of a gold standard is blocking further study.
Be well.
Stephanie, thanks for the note. Lisa
Thank you for taking the conversation in this direction. I’d like to discuss some things that may influence research and development in the central section of the lower left quadrant; that is “because they don’t make enough money doing it.” It’s possible that the product development model, which is heavily influenced by the vast profitability of the pharmaceutical sector and the less vast but still big profits of the medical device sector, biases people in power who might “want to help.” To want to help, in this framework, connects ambiguously to the desire to deliver products that help and makes money. However, to the extent this help is conceived as a proprietary medical therapy that can be bought or dosed as a unit, it may be misguided from the start. Many of these conditions are complex; that is, they may have multiple interacting causes and not be amenable to one-size-fits-many solutions. Helping may involve other kinds of interventions and supports, including general or upstream supports. So, for instance, when Parkinson’s patients say they want support to assist with dealing with social isolation and non-motor symptoms, and nutrition (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7592662/), they may be “talking past” clinical and biomedical researchers looking for a therapy for the disease.
This is just one quick example, but I do think the “product lens” for seeing the challenge may need to be explicitly handled in some way, because it may conceal as well as reveal.
Thanks for that input Gary! Lisa
This is a great article that mirrors many of the other ills of this society. It is obvious who’s in power when there are myriad solutions for erectile dysfunction and not much for menopause.
It would seem to me that the two axes are slightly redundant, people’s needs aren’t being met because the people in power don’t know how to help. Lisa alluded to the idea that some issues have lots of resources thrown at them and others have little to none. If you used resource allocation as the X axis, you could spread the ailments across the bottom of the matrix. Alzheimer’s and others would be in the bottom right, and Lyme disease would be in the bottom left.
If you really wanted to go crazy you would add a third dimension for the number of people involved.
Hi Terrence, I agree that a 3rd dimension would make this better, but it exceeded my powerpoint skills 🙂 Lisa