Video of my talk in Sweden is now online (skip to minute 7 unless you speak Swedish):
It’s a comprehensive summary of my research so far, as well as an argument for listening to patients and caregivers as we move forward into the future.
I opened with an example that was inspired by a visit to the Vasa museum in Stockholm and the seafaring history of the island of Gotland, where the meeting was held:
For hundreds of years, sailors on long sea voyages suffered from bleeding gums and wounds that would not heal. The disease is called scurvy in English – skörbjugg in Swedish. In 1601, a sea captain in England conducted an experiment using 4 ships. One ship’s sailors were had lemon juice added to their diets, 3 other ships did not. The sailors who got the lemon juice were much less likely to get scurvy. This was confirmed in further experiments throughout the 17th and 18th centuries, but it was not until 1795 that the British Navy started using citrus juice on all their ships and wiped out scurvy among their sailors.
200 years between discovery and widespread adoption! Why? One reason is that the people affected by the disease had no access to information about the cure and, even if they did, they had little control over what food was sent on the ships where they worked. It was an economic and strategic decision, finally, by leaders, to add citrus fruit to sailors’ diets and improve or save their lives.
Keep this in mind as I describe more recent history. Who has access to the information? Who is experimenting with cures and innovations that might change the world?
I’d love to hear what people think of the ideas and examples I lay out in the talk — the Cystic Fibrosis Foundation, PatientsLikeMe, the C3N Project, and others. Please share your thoughts in the comments!
The Vasa museum (such a fantastic place) has another story, how the King demanded that the ship be the largest ship ever produced with 3 entire gun decks and despite the craftsman’s warnings that the ship wouldn’t be stable or even seaworthy, built a very impressive ship that sank to the bottom of the river within minutes of being launched. The US healthcare system in particular is like the Vasa and often healthcare decisions and systems are setup that completely ignore the input of patients and stakeholders so it’s little wonder we see so many cases of products, services, and the system as a whole sinking to the bottom of the river.
I could have spent HOURS in that museum. Such an incredible, multi-layered story being told — and indeed the parallel to an overbuilt health care system is a good one to draw.
Great presentation Susannah! I especially appreciate how you weave stories of real people into your narrative. It has been my great pleasure to be in Sweden twice in the past two years to listen and learn from Sweden’s experience with quality registries and patient-led initiatives such as Christian Farman’s self-dialysis and in turn, to share experiences from PatientsLikeMe. There is no better time than now for people and their communities (real and virtual) to determine how they define, value and create health. Yet, this will not happen magically. Thanks for illuminating snippets of history of innovation pushed along by individuals and groups such as the sea captain, Edwin Murphy, the CF Foundation, PatientsLikeMe and C3N. We need to emulate models that intentionally and continuously seek health outcomes that matter to real people. Most importantly, thanks for shining the light on the innovation with the greatest promise to change the world – engaged, involved, and informed people ready to embrace health as they define it, even during times of illness, caregiving and aging.
Thank you, Sally! Yes, people in the audience were nodding when I started talking about PatientsLikeMe — you have fans in the far North. The other big reaction I got was when I talked about opening up the funnel from below — those images and stories resonate with people all over the world because it’s a shared reality that we have not yet fully tapped into the power of community, the power of family, the power of home-kept wisdom.
Favorite quote:
“..even if they did, they had little control over what food was sent on the ships where they worked.”
I can only imagine that if the sailors were aware of the discovery AND had control over their own food supply, that it would have taken significantly less than 200 years to eradicate. Today we can gauge how quickly people switch by looking at the time between when a better messaging app comes out and when it’s broadly adopted (just a matter of years). Consumers control the apps on their phones.
If I had a wish, it would be that in healthcare discussions we could separate the two questions:
1) Who should pay for care?
2) Who should have control over the care?
Different cultures and countries will answer question 1) differently, but I personally think that the answer to question 2) should always be “patients” (or their representatives — caregivers, guardians, etc.). This would go a long way toward reducing the time between treatment introduction and treatment adoption.
Hear, hear! I’m so excited to see — and build toward — what happens next.
Brett, I think you raise two VERY interesting questions! And I completely agree with you re your question number 2.
The Swedish healthcare system has some great benefits, one of which DEFINITELY is that we basically never pay more than in total around USD 400 per year for ALL healthcare and about as much for most prescription drugs. But, it comes at a price… As a result of us not paying more than peanuts out-of-pocket is (of course) that we are not really seen as “customers”. I know that customer is a problematic word when it comes to healthcare, but in Sweden I think we could do well with a bit more “customer-oriented healthcare”.
Summertime in Sweden (mid-June to mid-August) is a time when most people, incl doctors, go on vacation and so has my neurologist. He definitely deserves it, but in case I would need to contact him, chances are I will have to wait a few weeks for a reply during this time. You might argue that Parkinson’s is not really an acute condition and of course I would have to agree, it is not a matter of life or death. But, as you know Susannah, I have been struggling with some rather difficult symptoms, which unfortunately have been escalating and last week I felt that I wanted to discuss adding another medication to my already quite long list. Unfortunately, I could not get hold of my regular neurologist but a few days ago, I remembered that there is a private clinic that accepts new patients on short notice. I called and have an appointment next week. I am looking forward to seeing if the fact that I will be paying USD 250 out-of-pocket for my visit will make the new neurologist more eager to please me or not…
Very interesting talk and I especially liked the idea of two funnels of information/knowledge – one from the healthcare side and one from the side of the patient – and the importance of them being connected. I’m contemplating the relationship between the information/knowledge funnels and how it relates to the value network of Clayton Christensen?
Thanks, Par, for an excellent question! I am contemplating it, too (while working on a deadline for something else, so it might be a few days before I reply).
Thank you again for this question, which I finally had time to consider.
For anyone else following along, I talk about the two funnels of information/knowledge around minute 33 of the video above.
Also, if anyone is unfamiliar with the concept Par mentions, I found this definition in Christensen’s book, The Innovator’s Prescription (p. 184 of the hardcover):
“A value network is the context within which a firm establishes a cost structure and operating processes and works with suppliers and channel partners in order to respond profitably to the common needs of a class of customers.”
In an established value network, everyone who is part of the network has aligned interests and therefore it’s very difficult for new people or ideas to break in. Imagine football players in a huddle. They are not going to let you into the circle if you’re not on the team.
I also went back to Christensen’s classic book, The Innovator’s Dilemma, and found a passage on p. 34 that resonates (here’s the Google Books page: http://bit.ly/1ltxKOI):
“As firms gain experience within a given network, they are likely to develop capabilities, organizational structures, and cultures tailored to their value network’s distinctive requirements.”
In health care, stakeholders in the existing value network include:
– clinicians
– hospitals
– medical and nursing schools
– health care payers (insurance companies, governments, employers)
– pharmaceutical companies
– research institutions
– National Institutes of Health and other research funders
– electronic medical record companies
They all grew up together, in a way, and even though there is rivalry, distrust, and old scores to settle, they essentially get along. Or at least pretend to, even as they eye each other across the negotiating table.
Notice that patients are not on the list. You may have seen my earlier post about Christensen’s theories and where I see some opportunities:
False boundaries in health care
https://susannahfox.com/2014/05/17/false-boundaries-in-health-care/
When I describe the two funnels, I talk about how the internet forced open the “clinical” knowledge funnel so that patients have more direct access to medical journals, treatment options, etc. It is also my observation that “home” knowledge has traditionally been choked off and does not flow into the existing value network of health care. That’s the funnel I see coming up from the bottom. I believe that people who are able to find a way to tap into that knowledge will have an advantage in all kinds of ways in the future.
Returning to Christensen’s book, The Innovator’s Dilemma, I found a sentence I like on p. 37 (by removing the specifics, I am trying to make a universal point):
“________ customers were willing to pay a high price for _________, while customers in the other networks placed no value on that attribute at all.”
Imagine two families, one with a child with a rare disease and another with a child who is typical and healthy.
The rare-disease family, if they are able, will probably drive out of state if they need to in order to see a clinician who has special expertise in their child’s disease. Further, if they know about the option, the rare-disease family will look for a clinician who is part of a learning network of other clinical experts who can advise each other on which treatments work and which do not.
The typical family probably won’t want to pay the extra cost of driving out of state to see such a clinician. They don’t value that attribute at all.
Now add the component of “home” knowledge.
The rare-disease family will hopefully go online and find a community of other people who share the same symptoms and even the same exact diagnosis. Imagine there is a clinician or hospital system that encourages such participation and even joins in to learn from the community in order to improve the care of these kids living with a rare disease. How far would families be willing to drive to see a clinician who has access not only to the learning system set up for clinical knowledge exchange but also home-care knowledge exchange? In my experience, rare-disease families would drive pretty much anywhere if they are able.
The typical family may not because, again, they don’t value that attribute at all. They may not even be aware that the attribute exists. But it doesn’t mean that it doesn’t have value. Being part of a complete learning system has immense value to those rare-disease families and the clinicians who treat them.
This comment has grown to be the length of a post on its own, but I’ll close with this: We can’t boil the ocean. But we can ask questions. Ask yourself: who has something to gain from the opening up of the “home knowledge” funnel? Who has something to lose? Who is setting up the systems to encourage – or thwart – patients and clinicians who want to connect?
Hi Susannah, As I tweeted, there’s another difference to note here–the difference between a value chain and a value network.
“Value chain” is used to refer more to industrial, assembly-line like processes. Value chains tend to be linear, repetitive, structured, and inflexible.
In the 90s the term “value network” emerged. The term is more applicable to digital processes & flexible teams–think web vs.chain. For more details on the nuances, see http://icl.thesmartentrepreneur.net/tool/value-chainvalue-network .
IMO, healthcare processes have strived to be more like value chains, but in the future can/should be conceptualized more as value networks.
Yes, Christensen leaves patients out of his views of healthcare value networks. That’s arguably valid as a way of viewing the past, but there is no inherent reason why patients shouldn’t be part of value networks in the future. I’d suggest that the trends of patient engagement and the consumerization of healthcare are trying to incorporate patients into the value network.
Thanks, Vince! I’m grateful for the amplification of your comment on Twitter. And yes, the Christensen citations are archival, not fresh, but I think the inclusion of patients in the network is still a ways off — at least in most health care settings. In the speech I gave in Sweden (above) I described how patients could be incorporated into a learning system, as they are striving to do at Cincinnati Children’s with the C3N Project. I’d be glad to know of other examples!
Thanks Vince 🙂 The theories emerged by Thompson in 1967. He used the terminology long-linked technology (value chain), intensive technology (value shop) and mediating technology (value network). The theories re-emerged in the 1998 by Stabel and Fjeldstad (http://www.peopleandprocess.com/resources/Stabell_chain_shop_net.pdf)
Susannah – another example of the value network is the dialysis unit in Jönköping at which the patients have been trained to conduct their own dialysis and have access cards to the dialysis unit and can come in at their own conveniance. See https://www.youtube.com/watch?v=VEk-A3k98QA
The dialysis unit also employed one of their former patients, Patrik, to act as a bridge/facilitator sharing his “lived experience” and “also connecting patients to the resources needed.
Wow, what great comments that expands my thinking. Regarding the funnels and false boundaries, internet has forced the funnels to open and extend the amount of the information available in many areas including clinical and patient-generated data. Maybe we are now at a stage that the rivers of information are already there, however they must start to making sense to the other parties in orders to utilize it? Maybe a bit akin to moving from incommensurability to commensurability
Regarding value networks, which we are now finishing up a major paper on, together with among other the people of the C3N projects. With regard to Christensen’s network theory, there is also the http://en.wikipedia.org/wiki/Value_network#Fjeldstad_and_Stabells_value_networks which Christensen’s originated from and that since been further developed. Patient’s are the most important stakeholder and the value network can also be initiated from the patient and the family and also include other resources outside healthcare such as “astma camps”, “sport facilitates” etc.
Using a facilitated network doesn’t have to raise cost, it can also reduce cost by relieving the need of expensive healthcare and/or enabling new possibilities. The internet/smartphone/social media has created an infrastructure enabling that, which we previously couldn’t (another type of “false limitations”/”false boundaries”
There is much more to be said, although I will for now limit myself to the discussion above
Joel Gaines shared a link to an essay he wrote in April which pertains to our discussion:
“Healthcare Value – 4 Different Meanings”
http://blog.lifetimehealthdiary.com/healthcare-value-4-different-meanings/
He identifies the following stakeholders:
Patients
Employers
Medical Practitioners
Payors
And then, just to cut to the chase, he concludes, “To my mind we get the most value out of the discussion if we discussed how to increase healthcare value as patients. After all, it’s the one thing we all have, or will have, in common.”
Read the post and see what you think!
Early in my high tech career during the AIDS crisis I worked as a project engineer funding and building housing for people living with AIDS. Initially all of our clients died within 18 months of entering the system. We realized that the knowledge and actual care giving that was happening in and by the gay community itself was not only the ethical way to care for people but had better outcomes at lower cost..
We invested in supportive housing (I built the first HUD funded project in the US for people living with AIDS that brought housing, services AND the community care givers together.. In the next few years the larger community drove innovations in drugs and supportive care so that now AIDS is no longer a death sentence.
I then developed housing and strategic plans for entire regions for AIDS as well as those living with mental illness. It was in the communities that no one else wanted to work that we were the most innovative.. Today in the mental health community for example some organizations have 60% of their staff as peer counselors and coaches and have been able to cut re-admissions stays by 56% by using the experience of those who have been through the mental health system
My goal has always been to not simply engage patients nor empower them but to include them (and their needs) at the systems levels. This goes beyond focus groups to a core value and mission of designing for and with their needs in mind. (like we have done at Group Health Co-operative – which is owned by its 630,000 members) for the last 50 years. People always blow off the GHC model and claim it can’t be duplicated as it is an integrated system (both insurance and care) but the key is that it is owned by its members and that is something we could do (inculding patients on ACO advisory boards however was removed from the ACA) but there is nothing that precludes you from including them or their needs anyhow.
It isn’t about empowering individuals as much as changing how we deliver care so that your 80 year old grandmom and your 16 year old nephew both get the care they need at the right time and place that is respectful of their values and includes them in decision making.
Well said, Sherry, thank you! We are lucky to have your experience as an elder (in the way that Meredith Gould writes about elders in the health care social media community — not saying a thing about chronological age!).