In April, Harvard Business Review published my article, “How Chronic-Disease Patients Are Innovating Together Online.” Since then I’ve been collecting other stories about people gathering online to solve their own problems — an innovation pipeline powered by what I call peer-to-peer health care.
Fortunately and unfortunately, there are many examples. People living with long-term effects of COVID-19, for instance, are slowly progressing through the first few stages of the pipeline:
Stage Zero: Isolation. You feel alone in your diagnosis. Nobody has seen a case like yours before. As Heather Hogan wrote about her experience as an early LongCovid patient: “I was the science.” And, as if a cornucopia of mysterious symptoms was not enough, social isolation itself is a public health risk.
Stage One: Connection. The moment when you hear about, read about, or connect directly with someone else who shares your symptoms, diagnosis, life stage, or whatever characterizes your health status. This is what Brené Brown might call the “knowing laughter” stage, when shame falls away. Finding out that you are not alone is essential to survival when you are living with an unrecognized or poorly-understood condition like LongCovid.
Stage Two: Organization. People who have banded together start sharing ideas about how to solve problems they all face. For some COVID-19 long-haulers, that meant joining a group like Body Politic and contributing to their study. There are LOTS of groups satisfied with (or stuck at) this stage of development. They’ve solved a problem for themselves but their reach is limited and the ideas don’t spread.
Stage Three: Resource infusion. Mainstream institutions take notice of the small-group innovation and start helping. Ed Yong’s article about long-haulers in The Atlantic was one turning point – media attention is a powerful boost to any social movement. The U.S. Centers for Disease Control acknowledging that 35% of people who received a positive test result are not back to normal after the suggested “recovery” period is another example of a mainstream institution acknowledging the validity of the evidence gathered by patient networks. An article in the journal Social Science & Medicine and an editorial in Nature both called for patients to continue to be involved in defining the condition — another boost for the LongCovid groups’ signal.
What the LongCovid peer networks really need now, though, is institutional support and funding for their research and organizational efforts. And here’s the key point: It would not be charity. It would be a strategic advantage to have these pioneers and problem-solvers on your team.
The National Institutes of Health’s All of Us program’s heavy use of community partnerships is an example of mainstream attention and energy pulling grassroots networks from Stage Two to Stage Three of peer-to-peer health innovation. Count Me In is another example of serious money and resources being infused into patient-partnered research efforts.
Here’s are two questions for you, dear reader:
- What other examples have you seen of a transition between Stage Two (small-group innovation) to Stage Three (large-scale recognition and resources)?
- A “moon shot” is a good label for an ambitious project that originates inside a big organization (like a federal agency). What’s a term for an ambitious project that originates OUTSIDE a big organization but is recognized as needing to be nurtured and given resources by powerful, mainstream institutions?
Please let me know what you think in the comments.
The kidney cancer community on Smart Patients (https://www.smartpatients.com/kidney-cancer) started as a small peer-to-peer network of patients and caregivers helping each other. It’s now one of the biggest online disease communities anywhere and its members have created several advocacy organizations that lobby the federal government and have even funded their own trial for kidney cancer treatment.
Smart Patients also has a COVID community but, so far, we have not seen a transition to dealing with long COVID. It’s mostly people who are concerned about the interaction between COVID and another chronic condition such as Sjogren’s syndrome or multiple myeloma. But it will come.
It’s hard to build a community from scratch. It always starts with a small, dedicated group of patients or caregivers who are willing to put in the initial effort. Eventually, when the community reaches critical mass, it becomes self-sustaining but those initial few months can be lonely.
It’s worth it though when the end result is for another newly diagnosed patient to hear those magic words:
You are not alone.
Thanks, Kevin!
My parents benefited from the wisdom shared in the kidney cancer community on ACOR and then Smart Patients. Dad survived TCC (very much thanks to Mom’s stellar advocacy and caregiving) and unfortunately later was diagnosed with melanoma. It was treatment for that killer disease that finally brought him low.
Your points about the loneliness of building a new community are well taken. What I call Stage One (Connection) can be very tough for the community organizers. You make choices in the moment that you may wish you could undo — choosing a certain platform, for example, or naming your group something that doesn’t quite fit as your understanding evolves. How might we help guide people who are new to these choices?
I have a certain bias on where you should start your community! But…
When we start a new community on Smart Patients, we try to recruit a group of folks who are willing to be “conversations starters”. With our help, these people collect the kindling for the bright fire that will eventually burn.
We also offer several tools and options to attract new folks to a community to sustain the fire once it catches.
Wonderful post and interesting to think about the evolution of these movements in stages!
As a patient community who is somewhere around stage 2-3, I watch Covid long haulers and see how they are have had to face these stages at lightening speed this year, and wonder how to can support them as they move through the stages too. I can only imagine what the leaders of these communities are facing as they work to get organized and find answers.
On question #2: I think of any project outside of incumbent orgs as institutions as open source. So many great open source movements to point to that have changed healthcare like Dana Lewis’s work with Open APS (https://openaps.org) and Liz Salmi’s work with Open Notes (https://www.opennotes.org/).
Andrea, this is why the Light Collective’s work to synthesize your community’s goals/fears/wishes is so important. You are lighting the path for many.
FB is often a first stop and a good-enough solution for people who are glad to leave Stage Zero: Isolation and just get to be with other people in Stage One: Connection. But anyone who wants to solve complex problems in a secure environment will quickly learn that FB is not the place to do so. How do we help newcomers to the movement to know where to start and what to do when they are ready for Stage Two: Organization?
Have you seen this excellent essay by Alexandra Sifferlin, which posted last night? How Covid-19 Long Haulers Created a Movement: Patient organization has a long history as one of the most effective tactics for health condition recognition and action in the United States.
Another historical perspective was brought forward by Harry T. Paul in his October article, Covid-19 long-haulers and the experience of ‘hidden’ disabilities. Here’s the start of a thread he posted today on Twitter that’s worth a click.
I’m intrigued by your point about anything outside incumbent orgs as being “open source.” Will think on that and would love others’ thoughts.
Hi Susannah, you know my inflection points, now ancient history. I would love to offer the long COVID groups my data collection system for free. Not sure how to connect with them, so that is the current evolution I am working on!
I guess too if I reflect on that point of transition, I would say finding more fellow journeyers, characterizing what is happening, and listening to one’s experience, even that which doesn’t seem to fit. Thus my desire to get them these tools ASAP!
@Sharon, you struck gold – for the FHIR DevDays conference next week, LongCovid patient researcher Hannah Wei @HerLifeInPixels is the opening keynote. The longcovid Slack community has 18,000 members, if I recall correctly. They’ve published a google doc on how tech can collaborate with them.
I’ll hook you up on Twitter.
fun fact: Hannah’s co-conspirator in much of this is Hannah Davis, whose Twitter handle is the delightful anagram @AHandVanish.
(I imagine I’ve also mentioned to you that I’d love to figure out how to put “FHIR spigots” on the data in your system. Next week’s conference would be an apt time to chat that up.)
I helped start the digitally enabled, patient centric community group Project Apollo (https://projectapollo.me) and the 501c3 Precision Healthcare Ecosystem (https://precisionhealthcareecosystem.org) a few years back. Creating a place where patients (of all diagnosis) can learn to do self-study and how to leverage technology to help make better health and wellness decisions.
We have great community but seem to be at Stage Two for the time being. We are not satisfied with this and need to get to Stage Three but for mainstream to notice it takes someone to notice the ‘story’ and getting the “story out there”.
This is where we are focused currently. Better storytelling. This is the key.
Then it is dissemination of the story. That is the hard part. But there are great people to help with that. I believe if that happens the resources and funding will follow… but I could be wrong. What is your experience. ?
Michael,
A gigantic recurring elephant is the great difficulty such orgs often face in knowing who MIGHT conceivably fund their work. (The number of doors one might knock on, for a $100k check, is quite limited, and I know from my own decade of evangelism that they tend to pick who they want to fund, vs advertising for applications.)
In my case I ended up getting work as a keynote speaker, but that’s hardly a repeatable business model.
What’s your experience? What have you heard from others?
PatientsLikeMe developed a good and innovative business model that didn’t last forever, but at least they’re still around, absorbed by the borg but still doing what they do.
Thanks, Michael & Dave (and Lorraine, whose comment dovetails with this thread).
My observation is that peer-to-peer health communities and the work they do are seen by most funders & incumbent organizations as a “nice to have” not a “must have.” Something for the marketing department, not the COO, CTO, CMO, or CEO to engage with. How might we change the conversation to show that peer-to-peer health care is a problem-solving tool that will accelerate innovation, save people money, keep people out of the hospital, and [your idea here]?
What problem are you solving for people other than the patient members of your platform?
(Don’t get me wrong, btw. It’s FANTASTIC that you’re helping patients solve their own problems, discover new solutions, connect with each other etc. But that’s not going to get most investors’ attention, unfortunately.)
This is too long but I don’t have time to shorten it. Hope this helps.
> What problem are you solving for people
> other than the patient members of your platform?
Exactly, Susannah! As you know, my current role is Chief Patient Officer (yes, a C-level role) for a young company that’s doing data access in radiology. It’s not just that the company is young; everyone who works there is under 40. Oh, and they’re Canadian 🙂 We’re working right now on a blog post about why health-related companies should give patient voices genuine C-level, board-level, veto-power authority in their governance. Not a cosmetic or marketing job; actual “andon cord” / “stop the line” authority.
Browse Chief Patient Officer on LinkedIn and you’ll indeed see it’s often someone’s auxiliary title – someone in marketing or even specifically PR, but certainly not with veto-level authority like a CFO or CTO. Not governance-level, stop-the-line authority.
My answer to your question may be hard for some to hear because there’s no immediate ROI:
Without the patient voice in governance, our investments and operations easily miss the target – the target of achieving care.
They are optimized around things that do not include a firm voice on patient value. This is already crushing the US economy and distracting the government in ways that to my knowledge simply do not exist in other countries. And it’s all over the #LongCOVID story: “You’re not even sick.” “I don’t know what to do with you.”
So it becomes: does it matter whether we get the job done?
_________
I worry:
Without the patient voice actively, centrally involved – with veto power – our galaxy of individual organizations will keep operating and not accomplish the job of care, as defined by the person who needs the care. Readers who want to understand this from multiple angles can again read dave.pt/MalignantHC. If you want, ignore the “malignant” metaphor – just look at the graphics.
Again: Without the patient voice truly and powerfully involved in governance, we’ll keep spending more and more yet not getting the job done.
For people who respond “So what?” I can only say, that will kill us, and solving it starts with having the clarity to see: we need to REALLY, AUTHENTICALLY listen to the people for whom the system exists, and make it a priority to start accomplishing the purpose.
Dave, Susannah,
Thanks for your comments. Yes, I do hear you about the ‘elephant’ to tackle of who MIGHT want to fund something.
In my case, I am a physician and most of the patients in my group are my own. We have toyed around w sustainable model of doctor/patient relationship and perhaps group visits. But… this does not scale, it is just a ‘one-off’ between one doctor and his patients.
Yes, PatientsLikeMe was a good story but then became wrapped up in turmoil of big funding (a problem we would like to avoid).
Again, what I find necessary is to get our ‘story’ out there as an empowered patient group.
Susannah – you are absolutely correct that there are plenty of companies that LOVE a patient ‘group’ and it neatly ‘checks the box’ for their PR department.
I love what Dave is summarizing by saying ‘patients need to have a bigger seat at the table’. (A good example is that there are a LOT of different “Patient Experience” conferences and such and hardly EVERY have I seen a patient on stage speaking.
How can we get better equity for the patients we serve?
How can patients be part of the design of the system?
How can patients better engage with products “upstream” instead of ‘downstream’?
How can we get these companies / institutions to recognize the ADDED VALUE in all of this ?
The MyLymeData registry is over 14,000 strong. Funding is a huge problem for patient led research. You need champions who believe in your vision who are willing to step up and fund. These individuals are true angel investors in humanity.
Platforms matter also. Making sure that patients own and control data usage is important. You need to understand the business model of the vendor. Facebook and others who view users as the product are a disaster when it come to personal health information. There are platforms that work on a revenue basis and allow patient data protection, privacy and usage control.
You pay one way or the other for platforms, which cannot exist without a business model that keeps their lights on.
Lorraine Johnson
Lorraine,
That last line of your comment is indelible: “You pay one way or the other for platforms…”
Here’s a California Healthline article about COVID-19 groups on Facebook being overrun with misinformation. (Thanks to Elin Silveous for drawing my attention to it.)
A quote from the story:
Fadi Quran, director of campaigns for Avaaz, a human rights group that focuses on disinformation campaigns, said Facebook needs to revise the way it prioritizes content.
“Facebook’s algorithm prefers misinformation, prefers the sensational stuff that’s going to get clicks and likes and make people angry,” Quran said. “And so the misinformation actors, because of Facebook, will always have the upper hand.”
A study by Avaaz showed that misinformation and disinformation had been viewed on Facebook four times as often as information from official health groups, like the World Health Organization.
(end of quote)
This is a danger on multiple levels:
1) People could believe and act on the misinformation.
2) Moderators become exhausted while fighting against misinformation and are distracted from the real work they are there to do: help connect people to each other and to good information.
3) People leave the group and don’t find an alternative, missing out on the connection and potential for problem-solving.
“You pay one way or the other” indeed.
What amount are we, as individuals, willing to pay for an alternative platform? What amount is an employer, payer, foundation, or other responsible entity willing to pay to give people an alternative platform?
NOTE: I don’t know that these are even the right questions to ask, but it’s a start.
I’ve got too many great books on my reading list right now but I just ordered what looks like an essential one for anyone interested in the topic of health care improvement from the grassroots:
REVERSE INNOVATION IN HEALTH CARE: How to Make Value-Based Delivery Work, by Vijay Govindarajan and Ravi Ramamurti
The authors forward the idea that “trickle up” innovation is key to transformation of health care delivery. Low-cost ideas and products created in, for example, China and India, can be transported to the United States.
From what I’ve read of their work so far, it dovetails with the work that e-patient communities do and that I did while at HHS with the Invent Health initiative, highlighting the potential for kitchen-table inventors and Makers to contribute to the mainstream health care hardware conversation.
So is “reverse innovation” the mirror image of a “moon shot”?
This is getting so itchy. There’s still something “off” about this.
First, how is this “reverse” innovation?? If this is something new, is that not innovation enough? Or does “reverse” mean it didn’t come from the hallowed halls of HBS and its graduates – who are arguably the source of today’s disconnect??
Second, I literally feel my chest tighten when I read phrases like “competition based on value, as measured by patient outcomes per dollar spent.” The problem is that the current industry powers want to define the outcomes. Ask #longCOVID patients how that’s workin’ out so far.
Patient defined outcomes are what we need. Agency, autonomy, self-direction, freedom to have the industry listen to what we say is important.
Again, why is this “reverse” innovation? I refer readers to Eric von Hippel at Sloan, who wrote a 2005 book about democratizing innovation (now a free PDF), then about user innovation, then last year in Sloan Management Review When Patients Become Innovators,” which of course cites Dana Lewis and the OpenAPS community.
Not surprisingly, he’s a fan of the amazing Patient-Innovation.com.
Is Dana Lewis “reverse innovation”? Or the late Michael Seres, who was honored with the Patient Innovation award?
You and I know each other well; I hope I’m not being too irritating for other readers. If the system isn’t putting power in the hands of the people who have the problem, then the system is being the problem.
Oh look, the Patient Innovation site’s home page links to what people are doing for themselves around COVID-19. 🙂
There is certainly a value judgment implied by their phrasing: “reverse innovation” and “trickle-up innovation” makes it sound like a man bites dog situation when a problem is ingeniously solved in India, for example.
I prefer von Hippels’ “free innovation” phrase and the respectful “patient innovation” label but they don’t quite capture what I’m looking for: what to call it when a grassroots idea hatched by a peer-to-peer problem-solving group is recognized as The Answer.
I’m probably not articulating it well enough. I’ll work on that!
You’re articulating fine … I just let myself go down my own rabbit hole, in my haste to respond on an important distinction on a busy day.
Reminding self – the questions:
“1. What other examples have you seen of a transition between Stage Two (small-group innovation) to Stage Three (large-scale recognition and resources)?”
My only answer will seem tangential: PatientsLikeMe … which, as the only specimen, is an exception that illustrates the rule.
“2. A “moon shot” is a good label for an ambitious project that originates inside a big organization (like a federal agency). What’s a term for an ambitious project that originates OUTSIDE a big organization but is recognized as needing to be nurtured and given resources by powerful, mainstream institutions?”
I don’t have a term yet, but as we’ve been discussing, the key phrase in your question is “is recognized as needing…”. I’m evangelizing for everyone to recognize that the patient POV *is* what needs to be nurtured.
Once the epiphany occurs, I think “moon shot” is a perfectly good description of what to do. That epiphany always feels like “OMG I had no idea. How could I have missed it?”
The transition between Stage 2 and Stage 3 can take many forms. I’m trying to keep these definitions pretty open, to encompass lots of different examples so as to inspire as many people as possible to see themselves in the story.
PatientsLikeMe is a great example of a company that served people who were happy at Stage One: Connection. To know that you are not alone is powerful and PLM solved that problem for thousands. In addition, I’d argue, PLM launched at Stage Two: Organization, solving the problem of personal data collection for everyone who used their tools to track their own symptoms, interventions, outcomes.
Stage Three: Resource infusion also happened quite quickly for PLM because of the media attention and funding they received in their first years. They capitalized on these gifts and investment by expanding into more areas of research, building even better tools for data collection and community-building, etc. etc.
Being acquired by United Health Group was a second-choice outcome for PLM (let’s not rehash that here) but from the perspective of the innovation pipeline I’m articulating, it potentially takes this outsider, radical idea of centering patients’ lived experience as a source of insight to scale. I’m not saying that dream has been realized, but let’s place a marker on it as a potential outcome of the acquisition.
A quick question about reframing. Does it have to be big funding? (“Moon shot” connotes huge project.)
Let’s step back and look at what’s present by the time Step 3 has succeeded.
– Funding
– Management skills
– Technical skills – ability to do stuff (programming, community moderating, social media…)
What else am I missing?
Often (e.g. in #longCOVID today, or OpenAPS) the technical skills are present in step 2; in fact nothing grows without SOME skill creating some early result, right?
But the other ingredients – too often I see people look for funding and maybe get some, but without management skills it fails to bear fruit.
Great question! I don’t think money is the metric that matters most.
Equal to it, at the very least, is impact.
And just as you say, there are many ingredients to success. Your three are a good start:
– Funding
– Management skills
– Technical skills (and I’d add: to build a working prototype)
I’d add:
– Access to materials (here I’m thinking of hardware innovation)
– Access to tools (like the best 3D printers, but could also be access to a secure, customizable software platform)
– Access to testing (like the human engineering lab at Pitt – HERL)
– Access to expert advice (the kind of help that an engaged board of advisors/directors or an experienced regulatory expert can provide)
Prize competitions are an intake valve of “outsider” ideas for the U.S. government and big companies. They are a way to infuse a startup or a single inventor with some extra resources (access to experts, tools, funding) to see if they can make the jump from workshop to the big time.
For example:
In 2014, the FDA held a prize competition in food safety that yielded five hardware innovations aimed at rapid detection of Salmonella. When I asked the competitors what the best aspect of the challenge was, they all independently said: Being able to talk with people inside the FDA who would use the product. Same response from my FDA colleagues: They appreciated being able to communicate directly with the engineers and designers of the detection systems. They are otherwise barred from doing so (for good reasons, generally, to maintain a firewall between regulators and industry, but sheesh).
In 2013, the Assistant Secretary for Preparedness and Response sponsored a challenge competition to determine the location and status of durable medical equipment in order to aid first responders who need to prioritize people who have lost electricity during natural disasters. (As an aside, a high school student who was too young to enter submitted his idea using his dad’s name and won third place. Nikki Lurie, MD, then the Assistant Secretary, invited me to the meeting when the student presented his invention at HHS and it was a highlight of my time as CTO.)
So yes, funding is just ONE key ingredient.
You make me realize that my list of what’s present in stage 3 is really an intermediate stage. Arrival of management skills and technical skills is necessary but not sufficient, right?
The resource infusion stories you cite are way, way beyond where many longing initiatives die on the vine, right? I think you’re talking about stuff getting built, right? (I’m feeling an image like a time lapse video showing a plant’s shoots suddenly sprouting buds and blossoms. Know what I mean? It’s not just more of the same – new stuff starts happening, new forms emerge.)
Does it require a spec, a declaration of what needs to be built? Or do those ideas emerge from the competitions you cite, some of which you led?
Dave, thanks for engaging on a deep level with these questions!
You’ve got it: Stage One and Stage Two are where most peer health communities stop. And sometimes that’s fine! The group is satisfied with the connections they have made and/or the problems they have solved for each other. They may not see a path forward toward Stage Three and, crucially, no mainstream institutions are reaching out with resources.
My interest with this model for change is in shedding light on that path forward — for the peer health communities AND for the leaders of incumbent orgs who are hungry for new ideas. I hope that the next great new inventions, process improvements, etc. come from peer health groups that finally get boosted into Stage Three.
Prize competitions are one mechanism for boosting such “outsider” innovators because, for a short time, they get access to a menu of resources. And yes, the “declaration of what needs to be built” in a prize competition is often set by the sponsor (as in the case of the FDA Food Safety Challenge).
Inviting the people who are experiencing a problem into the design of the prize competition is a key element of a successful one, such as what happens when Tikkun Olam Makers invite people living with physical differences and disabilities to join the design team.
Make sense?
One of the problems of getting from stage 2 to stage 3 is obtaining sufficient and reliable funding to support sustainable operations. Volunteers only take you so far–you cannot be continually recruiting, training, and replenishing a volunteer base once you reach a certain size. The primary cost of these ventures (peer to peer counseling and patient registries) is the cost of personnel essential to keep the train chugging along. These are resource intensive activities. But funders like to fund “projects” rather than overhead.
Sustainability is a huge issue because funders do not want to take on a funding obligation that sustains an organization over time–which is what is required. Industry sources of data (PatientsLikeMe) take control of data away from the community and give it to the industry funder. (They had full disclosure so this is not nefarious, it is just how the economic equation works.) The government requires data be “open access”, which means that community stewardship over data use and privacy are again dictated by the needs of the funder. Vetting the use of data and insuring that de-identified data cannot be re-identified by combining data sources– may be THE key issue for a community–especially a community that is stigmatized.
Thank you, Lorraine. You know this space and these challenges so well — I appreciate your sharing your expertise.
My mother was diagnosed with Waldenstrom’s Macroglobulinemia back in 1998 when it was thought to be a disease that affected older men in their 70s. She was 53. At the time, she was an anomaly no one could explain very well. She spent a tremendous amount of time online which was, at the time, made up mostly of discussion boards. She posted and waited for responses and over time discovered others with this crazy disease. She kept track of the others, added info she found to the conversation, involved her doctor (Dr. Agus) in the conversation and created a space for herself to talk through things with other patients like (and unlike) her.
Of course, resources are different now than they were at the time. Over time, she spent less time online and more time just living. She was treated several times over the years with Rituxan (sp?) and in all she lived with the disease 28 years which is pretty remarkable I think.
The American Cancer Society now as a page about Waldenstrom on its website. And while that’s a good resource of information, the need to connect on a human level when diagnosed will not and has not diminished. I’m happy to know there are resources out there that can be more trustworthy than a Facebook group or things like it.
In my work at Cambia, especially as a digital marketer, and having been in the digital space since early early days, I spend a lot of time trying to focus on connection points for people. How we express ourselves, how we provide help or information, how we expect people to react, what we look and sound like in all channels. We have a tremendous amount of work to do to shift attitudes both internally and externally around trust and helpfulness (and I feel they’re very different by the way re: your blog post). What is most critical is that we do what we say and MEAN what we say and show that to our members in a way that is meaningful to them. So when people are diagnosed and going through the stages of the innovation pipeline, we can support them on their own personal journey without worry or financial ruin.
Anyway, a great post. I’m happy to have learned about your blog and these conversations
Thanks, Marisa! So happy you’re here — and what a great story to kick off your introduction to this blog community. Your mom was a pioneer, breaking a path through the wilderness for others to follow.
Your story brings up an important point: Peer to peer connection and innovation does not require fancy technology. People connect on old-school tech (and offline, too, I should add) and start to solve problems together. Yes, the new platforms have useful tools but the essential nature of a community is shared humanity and purpose.
Again, welcome!
Maneesh Juneja (aka #DigitalHealth Futurist; aka one of the sunniest, smartest people I’ve met on this blue marble) alerted me to some Stage Two peer health innovation happening on Twitter today. To read the whole thread, start here.
Essentially, because Maneesh is sharing his experience with LongCovid, other people are sharing theirs with him, including tips about how to get a clinician’s attention for worrying cardiac symptoms: Record your own irregular heartbeat, Quantified Self-style, and share the data!
As Chris @Gullick writes: “I had 3 arrhythmia’s back in July, that I was able to show the Doctor’s the KardiaMobile print out, which got me referred and a prescription of beta blocker, as it had passed by the time the hospital did their ECG. I did have another the beginning of October, but nothing else”
It’s another proof of what I wrote in July: The biomedical research model has a blind spot. People living with a condition or disease are traditionally seen as passive sources of data, not active participants in the research. We as a society miss out on promising avenues of inquiry. It’s time to widen our lens. (See: Advancing clinical registries to support pandemic treatment and response)
Again, I hope that one of the outcomes of the pandemic is that we honor the work of personal scientists like Maneesh, Chris, and all others who are creating and sharing tools, innovating on the fly, and hopefully getting the support they need. We need to help them move from Stage Two (organization and small-group innovation) to Stage Three (resource infusion).
Susannah (and all)
– what is your opinion of a ‘platform’ for patients to be able to safely and securely record, annotate, and quantify their experience with “X” (X = LongCovid, Lyme, A Fib, anything).
Basically what an EHR “should” be doing. Everyone always talks about creating an EHR more patient friendly etc… But hardly ever do I see an EHR created by patients and strictly FOR the patient. (More of an “Individual” Medical Record)
Right now, it is analog. Hacked together on homemade excel spreadsheets, journals, wearables, etc. None of this makes it into the medical record.
As a physician in data science, in my opinion, the data that happens ‘outside’ the medical system is much more valuable and important to me than what is done to the patient ‘in’ the medical system.
PLus, my patients are interacting and ENGAGING more with their own data. And the next step is to start having them CONNECT with each other on it.
Thanks !
This platform is something the Project Apollo group has been toying around with for some time and
Michael,
You are asking all the right questions — in this comment and in others. There are people who have built, are building, and will build in the future the platforms that serve the needs you describe. I think part of the problem is that it’s a chicken and egg issue: What comes first? The realization that these platforms will generate value OR the platforms themselves?
Facebook is an example of a minimum viable platform for peer connection and organization. There are many health-related Facebook groups that achieve what I’m calling Stage One and Stage Two of peer health innovation. But a lot of them get stuck. They can’t search the way they want to. Facebook doesn’t prioritize the kinds of functionality they need. Etc. The groups prove their value to those who are part of them, but the question is, can that value be documented and proved to mainstream institutions? Etc.