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.
On August 12, I’ll moderate a discussion about how to include peer-to-peer health insights and patient-generated data in clinical registries. It is part of a webinar series that is open to the public and offered free of charge thanks to funding from the Gordon and Betty Moore Foundation and support from the Council of Medical Specialty Societies and the Association of Academic Medical Colleges. Registration is required, so sign up now: Prioritizing Patient Engagement and Inclusion of Patient-Generated Covid-19 Data.
Here’s how the series organizers frame the overarching issues we face:
The Covid-19 crisis has exposed the limitations in our research and dissemination enterprise. Given the lack of timely evidence-based information about diagnosis and treatment of Covid-19, front-line clinicians are using social media and clinical anecdote to identify promising diagnostic and treatment strategies. The current crisis and the likely second wave that will follow presents an important and timely opportunity to focus clinical registries and clinical repositories on providing timely answers to front-line clinicians, researchers, and policymakers.
To address the current pandemic, we would use the broadly defined AHRQ definition of a registry:
An organized system that uses observational study methods to collect uniform data (clinical and other) to evaluate specified outcomes for a population defined by a particular disease, condition, or exposure, and that serves one or more predetermined scientific, clinical, or policy purposes.
Clinical registries support research and discovery through data abstraction and extraction from electronic sources, including electronic health records (EHRs), claims data, and clinician-entered data. Existing registry platforms could be redeployed to support surveillance efforts with special consideration for patients at highest risk (e.g., ASCO cancer registry). Clinical registries can also utilize multiple sources of information to coordinate efforts across specialties, including American College of Radiology’s efforts to assess the importance of prognostic information from chest imaging, along with other lab and metadata for current and future research. To better understand the long-term impact of Covid-19 infection, clinical registries could be used to assess health status and related disability from survivors.
The organizers reached out to me to help bring patient voices into the conversation. I’m honored to have been able to recruit a stellar panel:
Gina Assaf is an independent digital strategist, researcher, and designer for the humanitarian and global aid sector. She has worked for both Silicon Valley tech companies and Global Aid and humanitarian organizations such as the United Nations, IRC, World Bank, USAID contractors, Intuit, and GitHub. She has conducted design research and technology design for multiple sectors including financial, education, agriculture, and global health. She is an expert in conducting human-centered design and research methods. She is currently leading the Patient-Led Research Group within Body Politic where the team launched a survey and produced a report to describe and report on the COVID19 long hauler experience. It was the first patient-led research on the long hauler experience and was featured by several media outlets such as the Atlantic, the Guardian, and NPR. It was also cited in medical journals like the British Medical Journal and Fatigue. She is currently working with the team on the second survey exploring in more depth neurological symptoms, antibody testing, mental health implications, and diagnostics in prolonged COVID-19 recoveries. Twitter: @GinaAssaf
Hannah Davis is a research artist and generative musician working with data and machine learning. Pre-COVID, she was a speaker on topics like bias in machine learning, subjective data, and algorithmic music at places such as The Library of Congress, Bell Labs, and the Women in Data Science conference. She is a researcher with the Patient-Led Research Group. Twitter: @ahandvanish
Emily Sirotich is a PhD student in Health Research Methodology at McMaster University in Hamilton, Canada. Ms. Sirotich is passionate about data collection and patient/community engagement in all aspects of research. Her research interests include guideline development, rare diseases, and rheumatological disorders. Ms. Sirotich is also a Steering Committee member of the COVID-19 Global Rheumatology Alliance and Board Member of the Canadian Arthritis Patient Alliance. Twitter: @EmilySirotich
Gary Wolf is the co-founder of The Quantified Self, a global collaboration among users and makers of self-tracking tools exploring “self-knowledge through numbers.” His work has appeared in The Best American Science Writing, The Best American Science and Nature Writing, Wired Magazine, The New York Times Magazine, and other publications. His academic research and perspective articles about self-research and self-tracking have appeared in Frontiers in Computer Science, Journal of Circadian Rhythms, and BMJ Open. In 2005-2006 he was a John S. Knight Fellow at Stanford University. In 2010, he was awarded the AAAS Kavli Science Journalism prize. In 2016 he was inaugurated as a visiting professor in the Professorship New Business & ICT of Hanze University of Applied Sciences, Groningen, where he and Dr. Martijn de Groot established the Quantified Self Institute. He is a board member of the Open Humans Foundation, and a founding board member of Article 27, a nonprofit supporting participation in science. Twitter: @quantifiedself and @agaricus
My Twitter handle is @SusannahFox and you can follow the webinar series hashtag: #COVIDregistries.
During our panel on August 12, we aim to reframe and broaden the discussion, asking, for example: If the pandemic continues for a decade or more, what skills do we need to build? What tools do we need to deploy? How might we diversify our response and build scientific capacity in our population as well as in our clinics and labs? What actions can existing registries take to include patient perspectives?
Here’s my perspective:
COVID-19 patients and the people caring for them have been dropped into a maze with no map and no compass. But there are glimmers of light as they stumble forward, calling out to find each other, often on social media platforms.
That’s stage one of what I call peer-to-peer health care, when people begin to find each other and start trading stories. They can gather strength and expertise in community, whether the focus is prevention, treatment, or recovery.
Some people have advanced to stage two of peer-to-peer health care. They have begun to build tools, like clinical registries, symptom trackers, and peer communities. People are sharing their solutions for home care and infection control. Researchers are sharing preprints of their findings. Social media platforms collapse the boundaries between people who don’t yet, but should, know about each other so they can solve problems together.
Stage three is when people with resources and professional expertise take notice. Researchers are collaborating as never before, creating platforms and data collection tools to formalize the work that laypeople are doing to document their experiences and look for clues. Others are retooling to take advantage of a new era of investigation that demands cross-disciplinary collaboration.
For example, patients in Asia and Europe identified an odd symptom: the loss of the ability to taste and smell. Clinicians and scientists believed them and verified it.
Belief in the truth of a patient’s lived experience is a leap that doesn’t always get made in health care. Symptoms go unreported on a chart or are discredited, not because clinicians are ignoring the input, necessarily, but because they are busy or they misunderstand.They are trained to listen and yet still can’t hear what someone is trying to say. Plus, being new to illness or unused to fatigue can make it hard for a patient to know what to pay attention to or how to explain it. That’s why it is important for people to learn how to find each other, online or offline, and gain the observation and tracking skills they need to effectively describe what is happening.
There are still too many unknowns about COVID-19. Who else is trying to tell us something, but clinicians and scientists are missing the signal? How might we tune into their frequencies and learn from their experiences? How might we create a new research paradigm that is flexible and open enough to include everyone and rigorous enough to yield actionable findings?
To put it bluntly: How might we stop looking for our keys under the streetlamp because that’s where the light is shining? To me, that’s what relying on electronic health record data looks like in the age of COVID-19. We need to widen the lens of biomedical research and get creative, particularly in a fast-moving, unpredictable situation like a global pandemic.
For people who would like to dig in further in advance of the webinar, Gary, Emily, Hannah, Gina, and I collected the following background readings:
- First report of the Patient-Led Research Group within Body Politic
- Patients’ experiences of “longcovid” are missing from the NHS narrative (British Medical Journal Blog; July 10, 2020)
- Trish Greenhalgh: Towards an institute for patient-led research (British Medical Journal Blog; November 12, 2019)
- COVID-19 Global Rheumatology Alliance Patient Experience Survey
- Capturing Patient‐Reported Outcomes During the COVID‐19 Pandemic: Development of the COVID‐19 Global Rheumatology Alliance Patient Experience Survey
- Epidemiology and outcomes of novel coronavirus 2019 in patients with immune-mediated inflammatory diseases (Current Opinion in Rheumatology; July 15, 2020)
- A Conceptual Framework for Personal Science (Frontiers in Computer Science; June 20, 2020)
What questions or comments do you have for us, in advance of the webinar? What topics, data, examples would you bring to this audience of clinicians, researchers, patient advocates, funders, and other interested parties?
Image credit: Dandelion seed, by Charlie Marshall on Flickr. I chose this image for its beauty and symbolism — every seed carries potential, just as every person does, too. I also like the symbolism of a flower that is seen as a weed. Peer-to-peer health care is growing up between the cracks of the mainstream system like a tenacious, beautiful weed. How might we unleash and nurture these powerful seeds of change?
Here’s an interesting add-on we have on COVID19 data in NL: large cohort studies that e.g. show patient anxiety, connectedness, WFH, unemployment, worrying, sleeplessness etc https://coronabarometer.nl
Thanks for making the jump from Twitter! We have so much to learn from other countries’ and regions’ approach to tracking and understanding this virus and its effects. Please, let’s keep sharing our insights & resources (and a big thank you to the @LifelinesNL team for providing an English-language version of their site).
Thank you so much, Susannah for leading our upcoming webinar! Please join us!
Your framing of the issue is right on target. To make meaningful progress in understanding COVID-19 and many other conditions, we need to foster more collaboration and prioritize outcomes that matter to patients and clinicians.This line really resonated with me: “Belief in the truth of a patient’s lived experience is a leap that doesn’t always get made in health care. ” We are working with our specialty society members to help make that leap and prioritize patient experience and patient-reported outcomes (PROs) in clinical registries.
In terms of resources, we did a PCORI-funded engagement project with NHC on effective strategies to engage patients in clinical registries. The two primers (one directed at registries and one directed at patient orgs) can be found here: https://cmss.org/engaging-patients-in-clinical-registries/.
So much work to do – thank you for helping to lead the journey!
Thank you, Helen, for your leadership and for inviting us to join in the hard work of building a better future.
And thanks for pulling out that line. I wrote it with a legion of people in mind — all those who have hit walls in the health care maze and shared their story, trying to figure out how to navigate it for themselves and help other people, too.
Please continue to drop links into the comments if you see articles, resources, people to follow — anything that can help us prepare for and amplify the conversation we are having about #COVIDregistries.
One of our awesome panelists, Emily Sirotich, just shared this Nature column, for example:
Putting patients at the centre of COVID-19 research: Emily Sirotich’s involvement in a global alliance gave people with rheumatic diseases a driving seat in shaping research on how COVID-19 is affecting them.
What else are you seeing in the field? What other examples of patient partnerships can we point to?
Thanks Susannah, I have signed up for the webinar!
I am very interested in patient-led research and how that kind of research challenges many of the structures seen as essential in conventional researcher-led research. I browsed through the report “Report: What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team” with great interest. As far as I could see, this research was conducted without IRB or other ethical approvals. I would be very interested in the panelists thoughts on this issue and also what the reasoning within the covid-19 research patient-led team was when they chose not to go through a traditional process of IRB.
Great question! This is definitely a topic we will discuss during the webinar and can jump-start here.
Note to all: Our panelists have day jobs outside of their work as patient advocates (and some are living with long-term effects of the virus) so please be patient as we field questions & comments. But keep ’em coming! This is the best part of “flipping” a panel — finding out in advance what the audience wants to learn.
Thanks for the question, Sara! We actually ended up getting a retrospective IRB approval for it and will be publishing more formally soon. When we originally started collecting the data from within Body Politic, we wanted to do so for the support group mainly. We wanted to do it quickly, since there was no data at all on the longer duration symptoms and the non-respiratory symptoms and our doctors were not able to help us. We wanted to see our collective experiences and compare and contrast sooner than later! We realized the importance of sharing this more broadly and formally for research purposes and submitted for the IRB approval retrospectively. We followed all the ethical guidelines for collecting and sharing data such as only collecting anonymous data and asking for consent, etc. so getting the retrospective IRB was not a problem.
Thanks Gina! I actually don’t think that research of this nature should require IRB. Your fellow panelist, Gary Wolf is co-author of a paper that might be of interest: http://bmjopen.bmj.com/lookup/doi/10.1136/bmjopen-2018-025633
The cohort for our self-research study was much smaller than the 640 respondents in the study created and reported by the Body Politic team, so it’s a different beast. We wanted and needed maximum flexibility within the group to share and discuss our own data, while still wanting to have the possibility of publishing/disseminating what we learned through more or less traditional research channels. So we felt we needed a non-institutional approach. An open question, for me: What about larger, faster self-research projects that also want some of this flexibility to use and discuss non-anonymous data? Given the quality of the Body Politic work and the obvious need for more of it, what’s the review strategy for future work where anonymous survey data may be limiting?
You were the first person I thought of when I read this – was gonna ping you, but of course you’d already seen/acted on this =)
Don’t have anything much to add, looking forward to filling gaps in my admittedly not-high-level of knowledge of the specifics of registries. One of my interests is how patient communities can build/run their own vs having [some third party, anything from pharmaco to 501c org] build/run it.
Thanks, Casey! By “this” do you mean the Body Politic report? Or maybe another of the links? The threading isn’t clear on WordPress blogs.
Please do tune in! And if you want to dig into some background reading on the purpose & practice of registries, below is a list of what I’ve found useful as I prepare.
The basics of registries — types, uses, limitations, etc:
Registries for Evaluating Patient Outcomes: A User’s Guide (Agency for Healthcare Research and Quality; 2014)
The Use of Clinical Registries in the United States: A Landscape Survey (eGEMs – Generating Evidence & Methods to improve patient outcomes; 2017)
I’ve been reading about how traditional clinical registries are adopting “patient-centered” approaches but overall I have been disappointed by what I’ve found. In most cases, I’d characterize these as unequal relationships: the professional researchers are still holding the reins but they’ll let patients talk to them while they are driving.
The Council of Medical Specialty Societies and the National Health Council, for example, released a report (PDF) that lays out the steps that established research organizations can take to start to include patient input.
It is progress to ask patients what their priorities are, as this paper shows is possible: Priority setting partnership to identify the top 10 research priorities for the management of Parkinson’s disease (BMJ Open; 2014)
Here are a couple of models for truly patient-led registries:
Count Me In (Here’s a story about how they are finding clues about angiosarcoma’s genetic roots.)
Genetic Alliance calls their work advocacy-led research and calls for people to not only become research participants but drivers (ding ding ding!)
On our panel, I’m hoping we can break open the biomedical research paradigm, ask provocative questions about why things are the way they are, show how people can learn to solve their own health mysteries, AND outline practical steps that establishment institutions can take. It’s a tall order so please wish us luck!
I read the paper Susannah cited above. It’s really interesting. Full text is here: https://bmjopen.bmj.com/content/bmjopen/4/12/e006434.full.pdf.
The #2 priority for research set by this consultation process was: ” What approaches are helpful for reducing stress and anxiety in people with Parkinson’s?”
I appreciate your insightful work, but with Covid-19 disproportionately affecting Black and Hispanic populations, why are they not represented on this panel?
Thank you for pointing that out. Inclusion of BIPOC perspectives is important to the public conversation. I will do better in the future.
Hannah Davis, one of our panelists, shared her experience as a COVID-19 long-hauler on Twitter on Sunday, July 26, and her thread has gone viral. If you want to check it out, start here.
She lists her own symptoms, along with the bizarre ones being experienced by other long-haulers, and some of the challenges they have faced, such as poor access to testing and skepticism from both clinicians and public officials. The good news is that these patients have been able to find each other online, track their symptoms, share their stories (with each other AND the rest of us), learn about how to advocate for themselves, and (finally!) start to gain the attention and respect they have deserved all along.
Their struggle parallels the work I’ve seen in other patient communities:
1) Isolation. You not only feel alone but you are also told you are an extremely rare case. (This is what I call Stage Zero of peer-to-peer health care.)
2) Connection. The moment when you hear about, read about, or even connect directly with someone else who shares your symptoms, diagnosis, life stage, or whatever characterizes your health status. (Stage One of peer-to-peer health care.)
3) Organization. Innovation in small groups. 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. Here’s Hannah’s tweet listing such groups. (Stage Two)
4) Resource infusion. Mainstream institutions take notice and start helping. Hannah points to a few examples of this in her thread: Ed Yong’s article about long-haulers in The Atlantic was one turning point – the infusion of media attention is a powerful boost to any social movement. The U.S. Centers for Disease Control acknowledging that 35% of people are not back to normal after the suggested “recovery” period is another example of a mainstream institution adding fuel to the peer network’s fire. I am hoping that inclusion of Hannah & Gina’s insights on this panel is another boost of attention, in this case among the medical societies and academic institutions who run clinical registries. (Stage Three of peer-to-peer health care.)
How might we boost the signal for every stage of peer-to-peer health care, from connection to organization/problem-solving to resource infusion? What are the skills we need to build in people to contribute? And when will we know we have reached Stage Four — scale?
(If you want to learn more about what I mean about peer-to-peer health care, please see this 10-minute cartoon video or this article about innovation among people living with insulin-dependent diabetes.)
This blog is my outboard memory so here is where I will add a few new readings & discoveries:
I started thinking about the differences between a clinical trial and a clinical registry. Trials are investigational and dictate interventions. Registries are observational, retrospective, and do not necessarily tell clinicians and patients what treatments to try.
As Dr. Nancy J. Stark wrote in 2012: “Putting it simply, in a clinical trial we tell the investigators how to do it, in a registry study we observe how they actually did it.”
For more detail, see “Patient registries vs. Clinical trials” (Eversheds Sutherland, 2013)
And for a modern perspective, with implications for pandemic response, see: Digitizing clinical trials (Inan, O.T., Tenaerts, P., Prindiville, S.A. et al. npj Digital Medicine 3, 101; 2020). From the abstract (emphasis added):
“The traditional clinical trials system acts as a quality funnel for the development and implementation of new drugs, devices and health system interventions. The concept of a ‘digital clinical trial’ involves leveraging digital technology to improve participant access, engagement, trial-related measurements, and/or interventions, enable concealed randomized intervention allocation, and has the potential to transform clinical trials and to lower their cost.”
[Added on 8/4/2020:] The Council of Medical Specialty Societies published a primer in 2016 that succinctly summarizes the history and purpose of clinical data registries (CDRs). Here’s the PDF. And here’s a section I found useful:
“Monitoring and improving the quality of clinical care is a clinician responsibility and cannot be delegated to the insurance industry, Federal agencies, or for-profit data companies. Not only are those organizations ill-equipped to understand the nuances of clinical care, they generate most of their quality data by extrapolating from administrative claims. Professional society run CDRs trump these efforts because their data comes directly from the clinical record, and the findings are not inputted from claims data.
Furthermore, running a first-rate CDR creates a vehicle whereby specialty society members can not only improve the quality of the care they provide, but also satisfy most, if not all, the demands about to be placed on them by the Center for Medicare and Medicaid Services (CMS) Merit-Based Incentive Performance System (MIPS), an essential feature of CMS payment reform.”
I hope nobody reading this is shocked to find out that financial gain is part of the reason why CDRs are experiencing a boom. If you don’t participate in a CDR, you will not get paid as much as clinicians who do. [End of addition.]
Existing clinical registries were likely set up many years ago without a thought given to the possibility of participant engagement or the use of digital technology. I’m realizing that our panelists’ insights, experiences, and suggestions may sound futuristic to some attendees, but we need to think differently about everything related to clinical care and research. As Ed Yong wrote in The Atlantic (this week’s must-read piece):
“Normal led to this. Normal was a world ever more prone to a pandemic but ever less ready for one. To avert another catastrophe, the U.S. needs to grapple with all the ways normal failed us. It needs a full accounting of every recent misstep and foundational sin, every unattended weakness and unheeded warning, every festering wound and reopened scar.”
Thank you for doing this. This is super-timely and urgently needed.
As an epidemiologist who’s been thinking for the last decade plus about how to make the kind of research & discovery you describe more democratic, efficient, and accessible, I’d like to introduce one additional topic, via a telecom metaphor: the last mile.
Registries are great and exist, but the rate-limiting step is not data; it’s how to enable the diverse users of those registries, from citizens to scientists, across all of the (correct) stages you describe, to extract the specific data they need.
For 2 years, within epidemiology & informatics circles, I’ve been arguing that a) registries, observational studies, and population health data are essentially the same and b) owners/providers of those resources face a monumental challenge of how to make huge data securely & easily available in ways that allow users to–quite literally–go from millions of data points down to hundreds or dozens or a few data points that drive discovery and go/no-go decisions on research. I’m not sure there’s a real-world example today of secure & web-based COVID (or other) data that a researcher can access to dive deep into specific issues that enable hypothesis testing or new discovery.
We’ve been trying to tackle this with our own data, at https://www.calteachersstudy.org/for-researchers. We’re currently using a hybrid approach that includes some traditional registry approaches & additional discovery tools. We have more ideas on how to bridge this huge gap that everyone seems to be struggling with. Holler if you’d like to discuss more. Thanks again for tackling this issue.
Thanks, Jim!
Have you been able to tune in for any of the CMSS webinars? I regret not replying to your comment in time to alert you to today’s panel, which focused on cloud-based platforms and the challenge of bringing huge datasets online for multiple researchers to access. The videos usually go live within a few days so please do check back — it was a firehose of insights.
David Glazer, the Engineering Director of Verily Life Sciences, pointed out that early adopters of cloud solutions were those who were the most frustrated with the limitations of the “old ways” of storing data: people who work with genomic data and people who work with imaging data. “The old ways broke first with genomics and imaging” is how I think he put it, which forced them to adopt the new tech.
I also loved what he said about presentations and webinars — that he actually doesn’t like to talk about the software or the platform. He would rather talk about — or better, hear from other researchers about — the science and discovery that is enabled by their platform.
When we can let the software run in the background, and allow seamless flow to where data needs to go, we can move forward quickly as researchers. I think that fits with your point about the last mile, yes?
Hi Susannah – thanks for your response. I regret I couldn’t join today’s webinar, but it sounds great.
Count me in among that group David described: after 11 yrs working at the NCI on cohorts, I had enough of the “old ways” and moved to a cohort where I could create new ways. I’d add “observational data”–i.e., what exists in most registries, as a 3rd category to genomics and imaging. Observational studies are a smaller community, but we’re like genomics & imaging in that traditional data management methods simply no longer work.
I 100,000% agree with him on the value of being platform & tech & software agnostic. I have a biased perspective, but I interpret “the science and discover that is enabled by their platform” to be equivalent to what Bob Grossman and others have said about NIH’s vision for their data commons: i.e., driven by each user community’s needs. That is, imaging will have different needs than genomics, than observational studies.
I’d add only one more thing: adopting a customer-service viewpoint, and going deep into what specific scientific communities need, is ideal before deciding what software they need–and then, yes, having all of the compute (storage, deliver, and software) run in the background enables users to make discoveries.
Thanks again for doing this. Keep up the great work–we need it.
These comments are very useful as we prepare for the webinar. One topic that has emerged, as I think we had good reason to expect, is: “Who is the user?” When I question whether the typical architecture of patient registries can serve patients or be “patient-centered,” I’m questioning whether the needs of the biomedical research community and the needs of patients are sufficiently aligned to be served by a common infrastructure; and, if they aren’t, whether it is fair to put the burden on system designers to solve the misalignment without at least having the advantage of an explicit understanding of where users interests may clash. When Parkinson’s patients point to the stress and emotional burden of living with Parkinson’s as a key research priority, perhaps hope that their registries can help them understand and manage their own situation; however, most registries are a one way street, with data flowing to researchers but not back to patients. (Even where registries have data return as a “priority” this is typically aspirational, with very little effort directed to realizing this goal.) My reason for highlighting data return is not to say this is the main issue, or to inspire a conversation about technical ideas to make this easier. It’s just to illustrate that the professional biomedical “customer” for registries has different interests than patients do.
Susannah,
Gary, and all others here.
The comment section is certainly a ‘who’s who’ of Patient engagement for sure !
thank you ALL for your comments and pushing the idea of putting ‘patients’ into all the “patient-centric” vernacular that is out there.
Sorry I missed webinar. Was busy delivering care to my Project Apollo patients by shifting the way I deliver care in the COVID arena by doing in-home visits. Then “wiring” them up with wearables and surveys to follow their longitudinal data streams together.
I agree with all that is written here and wonderful content that has been brought forth. In my opinion, patient engagement is VERY meaningful. Not just for the patient. I am really leaning in by engaging myself into the storyline and longitudinal journey of each patient. We are actively engaging on how to better tell our own ‘stories’ on a timeline of health and wellbeing.
Also, Susannah, you said it perfectly about “connection”. To me, that is true patient engagement. When they start engaging with each other. That is where the magic happens. 🙂
thanks again all !
for more info on
Thank you! Please don’t worry about missing the webinar — thanks to funding from the Gordon and Betty Moore Foundation, the organizers were able to get the video up quickly. I’ve linked to it and the presenters’ slides on this post, where the conversation will continue for days (I hope):
Patient-led research is a key element of pandemic response