LongCovid is an extraordinary challenge to the human body. It’s been met with an extraordinary response from the human spirit.
As I wrote in a previous post, we are watching patients, caregivers, clinicians, researchers, and policymakers move through the stages of peer-to-peer health innovation at a fast clip. Faster than I’ve ever seen in my 20 years of tracking this phenomenon.
So let’s check in on where it stands in the lifecycle of a new idea.
As I wrote in 2011:
Here’s my simple definition of peer-to-peer healthcare:
Patients and caregivers know things — about themselves, about each other, about treatments — and they want to share what they know to help other people. Technology helps to surface and organize that knowledge to make it useful for as many people as possible.
An idea whose time has come? Let’s think that through, beginning with an excerpt of Kevin Kelly’s post, The Natural History of a New Idea:
The notion that ideas have lifecycles has many antecedents. Various people get credit with first articulating it. Here is my version:
The Natural History of a New Idea:
1) Outright wacko.
“This is worthless nonsense.”2) Odd but unproven.
“This is an interesting, but perverse, point of view.”3) True but trivial.
“This may be correct, but it is quite unimportant.”4) Obvious.
“What’s new? This is what we’ve said all along.”Apply to your favorite example.
I’ve seen this abbreviated to: “Crazy. Crazy. Crazy. Obvious.” But I think it’s more useful to pay attention to the gradations. Where along this scale is your idea?
The evidence base for the power of health peers in general has grown over the last decade. National surveys in the U.S. have documented peer-to-peer health care’s popularity among both teens and adults facing health challenges. The science behind peer support is strong and growing.
People living with LongCovid are benefiting from this progress. Patients are finding each other online thanks to social platforms and increased awareness that this is a good thing to do for both their physical and emotional well-being.
Thanks to the efforts of a self-organized, international, patient-led study group, we have a growing body of evidence that LongCovid is devastatingly real.
Early reporting by writers like Ed Yong of The Atlantic has now been supplemented by stories in every newspaper, on every network, and from multiple angles. A recent gem, which aligns LongCovid with ME/CFS: “What if you never get better from Covid-19,” by Moises Velazquez-Manoff in The New York Times. The path toward legitimacy and simply being believed was broken inch by inch by the ME/CFS community and we owe them an enormous debt of gratitude.
Clinicians and researchers faced with a mystery are turning for guidance from the “legions of sick who were hospitalized early on or mobilized in online forums to share stories and offer support.” The World Health Organization adopted the term coined and preferred by patients: LongCovid. In the latest triumph, the U.S. National Institutes of Health has been allocated $1.15 billion for LongCovid-related research — extraordinarily fast recognition for an emerging syndrome identified and documented by patients.
Have we reached the final stage? Is peer-to-peer health care finally obvious, thanks to LongCovid?
Let me know what you think in the comments below.
Featured image: Barnacle Goose, by Corine Bliek on Flickr – my homage to “birds of a feather flock together.”
Hi Suzanne,
As I read your post I wondered about the long covid community on Twitter. Searched hashtags for Long Covid on Symplur https://www.symplur.com/search/Long+Covid And sure enough there are more than 8.
Yes, peer-to-peer health care is here and it is good for all of us.
Thanks, Dee!
You and the Women of Teal cohort are pioneers of peer-to-peer health care. The LongCovid patients and others are following in your footsteps.
From your perspective, how has awareness and adoption of peer health resources among people dealing with or treating ovarian cancer changed in the last 10 years?
When I was first diagnosed in 2005 there was no online support for OC cancer patients/survivors except for ACOR. That is where I was able to go with my questions. I can tell you the names of all the women who reached out to respond. It was a lifeline for me. Now there are a lot of platforms and patient communities on Twitter, and Facebook.
As for Twitter – It was #BCSM that led the way for the #gyncsm community. Dr Attai, Alycia and others conducted a study on the benefits women received from taking part in chats and when that study was published, peer-to-peer support was given some credence.
Both our communities have published studies since then and worked with researchers looking at needs of survivors and caregivers too. If you can provide the data to health care providers I think the feel more comfortable it becomes.
“I can tell you the names of all the women who reached out to respond.”
That resonates. My own experience with peer-to-peer health care is in food allergy. I vividly remember finding my first online peer group and the names of the people who answered my questions.
And yes, when clinicians can look at data, it helps them to see the value of health peers. It’s one reason I’m excited to see increased interest in & funding for research. If anyone has a literature review to share, please do, even if it’s for one corner of the health care world like oncology, diabetes, post-viral illness, Parkinsons…
Thanks to Maneesh Juneja, I just added another line to my post: “The path toward legitimacy and simply being believed was broken inch by inch by the ME/CFS community and we owe them an enormous debt of gratitude.”
Indeed, the ME/CFS community is owed much more than that, as are other communities who have been disrespected and disbelieved. Please add more examples and insights about this aspect of peer-to-peer health care if you are reading this and have some to share.
Thanks Susannah.
It still astonishes me how much I’ve learnt about how to manage my Long Covid symptoms from other patients (Long covid and ME/CFS together) using Twitter in particular.
This really hit me when I visited a NHS Long Covid clinic last week and whilst it did offer some value, it dawned upon me that the bulk of my knowledge these past 9 months has come principally from other patients on the internet, along with a very supportive GP over the phone.
I now wonder if anyone from healthcare systems is formally listening to the insights, stories, and concerns that Long Covid patients are sharing on social media (whether on Twitter or in patient communities) and actually using that real-time source of knowledge to shape care, research and priorities. I’ll never forget the many phone calls with my GP where she told me she was learning so much from me (about Long Covid) with each phone consultation, but how can this feedback loop of the system learning from patients be more structured?
Finally, It’s wonderful that the Long Covid patient community has been so great at advocacy and attracting attention and resources, but my hope is that ALL patient communities (ME/CFS is just one example of many) who do support each other but have largely been ignored by many doctors, policy makers and researchers also get the recognition they have been seeking for a long time.
So many articles being written about going back to normal after the pandemic, but we don’t want to go back to normal do we?
We want to go back to beyond normal, where no patient gets left behind.
Maneesh, thank you!
I want to highlight one of the great points you make: Someone should be documenting the real-time knowledge sharing that is happening on social platforms.
Happily, we have a model for this: a Learning Health Network. My teachers on this topic include colleagues at Cincinnati Children’s Hospital, which is part of a wide range of Active Learning Networks on conditions ranging from autism to cystic fibrosis to rheumatology and more. The Institute for Healthcare Improvement is another deep resource.
How might we spread this model further and faster?
One way is to build better platforms. Facebook is the easy default for lots of people but there are drawbacks and limitations to their platform. Twitter is another easy way for health peers to find each other, as Dee Sparacio has written about in another comment. Reddit hosts peer health communities. PatientsLikeMe, Smart Patients, Inspire, and other companies have created vibrant patient and caregiver communities. Hive Networks is an example of a start-up that is building a secure, collaborative platform for what they call “working communities” (proud to disclose I’m on the board of directors).
What other ideas and innovations are springing up during this crisis? If anyone has observations or pointers to further research, please share.
Thank you Susannah for this wonderful post! I’m resonating with the comment about documenting this knowledge sharing and have two follow-up questions:
1. The knowledge sharing associated with long covid has been emergent (rather than by design). How do we leverage and apply the value of what has emerged to design for this and other problem spaces in health and healthcare? How to engage people that are not engaged on social media such as vulnerable populations or older folks, with obvious benefits for these individuals themselves, but also to others in learning from them regarding potential strategies of managing health and healthcare in the context of various life challenges that may not be currently represented in these emergent communities.
2. How to make progress on the challenges on the clinician side including openness to patient knowledge sharing and incorporating that knowledge into the clinical picture?
I think that the pandemic certainly shone a light on peer-to-peer health, as well the health & wellness ‘work’ of lay individuals. It feels obvious to me because that’s already the perspective that I bring. But unfortunately, I would be concerned that it’s not obvious to most.
Regards,
Liza
Thanks, Liza! Great questions. Conversations on my blog often go on for weeks so hopefully people will keep stopping by and adding insights (and more questions).
Thank you for this, Susannah. Just recently, a long Twitter thread with several MDs participating on this topic included this response from one of the docs:
“Oh please, not more about #LongCovid” – followed by a bunch of angry emojis.
Just imagine being that guy’s patient if you happened to be a LongCovid patient.
We are used to similarly dismissive responses here in the wonderful world of women’s heart disease. Despite years of research suggesting that female heart patients are at significantly higher risk of being misdiagnosed (and under-treated even when appropriately diagnosed) compared to our male counterparts, there are many people with the letters M.D. after their names who still appear offended by the mere mention of yet another such study.
Here’s an example: when the New York Times did an excellent piece on the misdiagnosis – or missed diagnosis – of SCAD (Spontaneous Coronary Artery Dissection, a dangerous cardiac condition that strikes mostly young, healthy women with few if any cardiac risk factors), the response to the article from some physicians was predictable. One wrote:
“I work in an emergency room. No one’s symptoms are trivialized because of their gender. That is absolutely ridiculous.”
That’s funny. Because we know that women’s symptoms are trivialized specifically because of their gender every day. (If you wonder about that statement, read Maya Dusenbery’s book “Doing Harm” – but don’t open the book without taking your blood pressure meds first).
If you happen to be a Black or Hispanic or Indigenous female patient, good luck to you. The stats are grim, and have been for decades.
So it was the reader responses to the NYT article that essentially became the story. I wrote more on this in “There Is No Gender Bias in Medicine. Because I Said So.” https://myheartsisters.org/2019/11/10/no-gender-bias-in-cardiology-because-i-said-so/
Throughout the reader responses, I couldn’t help but think, “Just imagine being that guy’s patient…”
Thanks so much Susannah for shining more light on the importance of believing the lived experience of patients – in LongCovid, ME/CFS and in all diagnoses that are poorly understood in medicine.
regards,
C.
Thank you, Carolyn!
My hope is that because clinician leaders like NIH Director Francis Collins are praising the patient-led researchers’ work in not just one but two blog posts, the LongCovid experience will be different. Have we ever seen such a rapid acceptance of patient-generated data into the scientific conversation at the highest levels? Is this a unicorn event or a sign of future incorporation of patient-led research and insights? How will we know? What signals should we look for?
The acceptance is uneven but it does seem to be happening.
At present, one of the objections from some regulators is that some dismiss information gathered via social media as anecdotes or unreliable narratives.
There must be a way of presenting people’s lived experience from social media platforms in an ethical manner. And to deliver data on both the quantitative and qualitative in a way that honours those experiences and testimonies and makes it more straightforward to integrate in policymaking and decisionmaking.
Maybe collaboration with various organisations and patient groups in co-designing what this would look like would show respect for patient-led research and insights.
This is such an important post, Susannah.
I’m very convinced that peer-to-peer healthcare is here to stay, but more work is needed to understand what led the medical community to embrace Long Covid patient-led research and figure out how to build into lasting culture change in medicine.
As the caregiver/advocate for my newly minted adult daughter as she learns to navigate both long Covid and healthcare in general for herself, the struggle is real. She has encountered sexism, ageism, dismissive language, and general lack of listening from multiple medical providers. The only reason we’ve been able to ferret out skilled diagnosticians willing to follow her symptom trail is thanks to my experience with breast cancer advocacy and my breast cancer patient peers teaching me how to navigate the healthcare system. In my opinion long Covid care is like the Wild West. Hanging a shingle out your door doesn’t imply quality care. Health care in general is fragmented and particularly so for catastrophic diagnoses and the best way to slog through the crazy is surrounded by peer patients.
Jenn, thank you. We build our skill sets through life experiences and then (hopefully) teach other people who want to skip ahead a few spaces.
In an earlier post I wrote about stages of peer health innovation, how people move from isolation to connection to organization. I’d love for you to check it out and see if you agree that what you’re describing is an example of small-group innovation (Stage Two) when people network together and benefit from each other’s experiences/insights, but it spreads person-to-person, not exponentially.
In any case, your daughter is lucky to have you as a guide!