Sara Riggare, PhD, an expert in patient-led research and personal science, tweeted this animated GIF depicting the common process in starting personal science, which is based on Anne Wright’s work:
Andrea Downing was among those who replied, writing: “My feedback: We’ve been saying for years what you outline here. The question is: how do we legitimize the role on equal footing?”
I thought we could start a list. Here are ways I’ve seen the practices of personal science & peer support legitimized:
- publication in academic journals, books, popular press
- conferences like Stanford Medicine X, Quantified Self
- films like Unrest
- sentinel events show value, such as the Patient-Led Research Collaborative’s work on Long Covid (see: Crazy, crazy, LongCovid, obvious)
Dana Lewis built up her academic publications over the years. See: https://diyps.org/research/ She went about it very mindfully – a story she tells in Episode 48 of Design Lab podcast.
Gary Wolf and his colleagues recently published a new book, Personal Science: Learning to Observe.
Let’s add to this list of strategies and examples. What have you seen? What tools have people deployed to legitimize the role of personal science — or other previously-unproven ideas now deemed obvious?
Headline was indeed inspired by Hammer’s fourth studio album. Just trying to have some fun, y’all. I chose an image of my own sunflower patch in high summer because sunflowers turn to each other for help.
My 12 years of work with PCORI as a patient-caregiver reviewer, Advisory Panel leader, and now on the Board of Governors allows me to open more doors, advance equity, promote research about questions people have, and increase evidence from non-medical data and information.
Thanks, Danny! That is an additional path to legitimacy:
An individual can gain personal credibility by volunteering for unpaid and paid work within mainstream institutions. By so doing, you can publicize new ideas and invite other non-traditional people to join you.
Steven Epstein wrote about how AIDS activists followed this path in the 1980s. His book: Impure Science: AIDS, Activism, and the Politics of Knowledge.
Fran Visco and the National Breast Cancer Coalition also train breast cancer patients in how to credibly serve as experts on scientific committees.
What other trainings are available to people?
Genetic Alliance has a number of trainings – offered throughout the year. You can subscribe to our weekly bulletin and get the latest: https://geneticalliance.org/mailing-lists
Thanks Susannah for doing this! I will list some scientific publications in the field, starting with my own PhD thesis
PhD thesis: “Personal science in Parkinson’s disease: a patient-led research study”
Download here: https://www.riggare.se/2022/01/21/my-phd-thesis-is-now-available/
Watch defence ceremony here: https://youtu.be/aLw-ZL8_Xd0
Scientific articles relevant to the field:
– Riggare S, Hägglund M. Precision Medicine in Parkinson’s Disease – Exploring
Patient-Initiated Self-Tracking. J Parkinsons Dis. 2018;8(3):441-446. doi:
10.3233/JPD-181314. PMID: 30124453
– Riggare S, Unruh KT, Sturr J, Domingos J, Stamford JA, Svenningsson P,
Hägglund M. Patient-driven N-of-1 in Parkinson’s Disease. Lessons Learned
from a Placebo-controlled Study of the Effect of Nicotine on Dyskinesia.
Methods Inf Med. 2017 Oct 24;56(99):e123-e128. doi: 10.3414/ME16-02-
0040. Epub 2017 Oct 24. PMID: 29064509
– Riggare S, Scott Duncan T, Hvitfeldt H, Hägglund M. “You have to know why
you’re doing this”: a mixed methods study of the benefits and burdens of
self-tracking in Parkinson’s disease. BMC Med Inform Decis Mak. 2019 Aug
30;19(1):175. doi: 10.1186/s12911-019-0896-7. PMID: 31470832
– Riggare S. Patient researchers – the missing link? Nat Med. 2020
Oct;26(10):1507. doi: 10.1038/s41591-020-1080-4. PMID: 33029015
– Riggare S, Hägglund M, Bredenoord AL, de Groot M, Bloem BR. Ethical
Aspects of Personal Science for Persons with Parkinson’s Disease: What
Happens When Self-Tracking Goes from Selfcare to Publication? J Parkinsons
Dis. 2021;11(4):1927-1933. doi: 10.3233/JPD-212647. PMID: 34120915
– Riggare S. E-patients hold key to the future of healthcare. BMJ. 2018 Feb
26;360:k846. doi: 10.1136/bmj.k846.PMID: 29483151
– Riggare S, Unruh KT. Patients organise and train their doctors to provide better
care. BMJ. 2015 Nov 30;351:h6318. doi: 10.1136/bmj.h6318.PMID: 26620969
– Unruh KT, Pratt W (2008) The Invisible Work of Being a Patient and Implications for Health Care: “[the doctor is] my business partner in the most important business in my life, staying alive.” Conf Proc Ethnogr Prax Ind Conf 2008, (1) 40–50.
– Papautsky EL, Patterson ES (2021) Patients Are Knowledge Workers in the Clinical Information Space. Appl Clin Inform 12,.
– Snow R, Humphrey C, Sandall J (2013) What happens when patients know more than their doctors? Experiences of health interactions after diabetes patient education: a qualitative patient-led study. BMJ Open 3, (11) e003583.
– Heyen NB (2016) Self-Tracking as Knowledge Production: Quantified Self between Prosumption and Citizen Science. In Lifelogging: Digital selftracking and lifelogging – between disruptive technology and cultural transformation
– Sharon T, Zandbergen D (2017) From data fetishism to quantifying selves: Selftracking practices and the other values of data. New Media Soc 19, (11) 1695–1709.
– Blomseth Christiansen T, Brogård Kristensen D, Larsen JE (2018) The 1-Person Laboratory of the Quantified Self Community. In Metric Culture.
– de Groot M, Wolf GI (2020) A Conceptual Framework for Personal Science. Front
Comput Sci 2, (June) 1–5.
– Heyen NB (2019) From self-tracking to self-expertise: The production of selfrelated
knowledge by doing personal science. Public Underst Sci 1–15.
– de Groot M, Drangsholt M, Martin-Sanchez FJ, Wolf G (2017) Single Subject (N-of-1) Research Design, Data Processing, and Personal Science. Methods Inf Med 6, 416–418.
– Ruckenstein M, Pantzar M (2017) Beyond the Quantified Self: Thematic exploration
of a dataistic paradigm. New Media Soc.
– Roberts S (2010) The unreasonable effectiveness of my self-experimentation. Med Hypotheses 75, (6) 482–9.
– Grant AD, Wolf GI (2019) Free-Living Humans Cross Cardiovascular Disease Risk Categories Due to Daily Rhythms in Cholesterol and Triglycerides. J Circadian Rhythms 17, (1) 1–13.
– Grant AD, Wolf GI, Nebeker C (2019) Approaches to governance of participant-led research: a qualitative case study. BMJ Open 9, (4) e025633.
– de Groot M, van der Wouden JM, van Hell EA, Nieweg MB (2013) Evidencebased
practice for individuals or groups: let’s make a difference. Perspect Med Educ 2, (4) 216–221.
– Larsen JE, Eskelund K, Christiansen TB (2017) Active Self-Tracking of Subjective
Experience with a One-Button Wearable: A Case Study in Military PTSD.
– Arendt IMTP, Riisager LHG, Larsen JE, Christiansen TB, Moeller SB (2021) Distinguishing between rumination and intrusive memories in PTSD using a wearable self-tracking instrument: A proof-of-concept case study. Cogn Behav Ther 14, 1–21.
– Wright A (2016) Self-Tracking: Reflections from the BodyTrack Project. Sci Eng
Ethics.
– Li I, Dey A, Forlizzi J (2010) A stage-based model of personal informatics systems.
Conf Hum Factors Comput Syst – Proc 1, (January) 557–566.
– Almalki M, Gray K, Martin-Sanchez F (2016) Activity Theory as a Theoretical Framework for Health Self-Quantification: A Systematic Review of Empirical Studies. J Med Internet Res 18, (5) e131.
– McBain H, Shipley M, Newman S (2015) The impact of self-monitoring in chronic illness on healthcare utilisation: A systematic review of reviews. BMC Health Serv Res 15, (1) 1–10.
– Fox S, Duggan M (2013) Tracking for Health.
– Nafus D, Sherman J (2014) This one does not go up to 11: The quantified self movement as an alternative big data practice. Int J Commun 8, (1).
– Hagen N, Kasperowski D (2017) Self-Quantification of Body and Health – An
Explorative Study of Epistemological Relations to Data Among Self-Tracking Individuals.
– Choe EK, Lee NB, Lee B, Pratt W, Kientz J a. (2014) Understanding quantifiedselfers’
practices in collecting and exploring personal data. Proc 32nd Annu ACM Conf Hum factors Comput Syst – CHI ’14 1143–1152.
– Smarr L, Hyde ER, Mcdonald D, Sandborn WJ (2017) Tracking Human Gut Microbiome Changes Resulting from a Colonoscopy. Methods Inf Med 442–447.
– Lewis D (2019) History and Perspective on DIY Closed Looping. J Diabetes Sci Technol 13, (4) 790–793.
– Alemi F, Moore S, Baghi H (2008) Selfexperiments and analytical relapse prevention. Qual Manag Health Care 17, (1) 53–65.
– Munson SA, Schroeder J, Karkar R, Kientz JA, Chung C-F, Fogarty J (2020) The
Importance of Starting With Goals in N-of-1 Studies. Front Digit Heal 2, (May)
1–7.
– Greshake Tzovaras B, Angrist M, Arvai K, Dulaney M, Estrada-Gali anes V, Gunderson B, Head T, Lewis D, Nov O, Shaer O, Tzovara A, Bobe J, Price Ball M (2019) Open Humans: A platform for participant-centered research and personal data exploration. Gigascience 8, (6) 1–13.
– Vayena E, Tasioulas J (2013) Adapting Standards: Ethical Oversight of Participant-Led Health Research. PLoS Med 10, (3) 1–5.
– Streuli JC, Vayena E (2015) The Promising Revolution of Participant-Led Research
in Rare Neurological Diseases; Epileptologie 32, 177–182.
Wow! Thanks, Sara.
Your own story is a parable about legitimacy of patient-led research. For those who are not aware of her journey, see:
https://www.riggare.se/2018/09/16/ethics-and-phd/
https://www.riggare.se/2019/07/23/but-sara/
And, triumphantly:
https://www.riggare.se/2022/03/28/on-this-day-10-years-ago/
Hmmm – an entrenched patriarchal field… I have fought “fire with fire” for 26 years now. I have more than 150 peer-reviewed papers and another 100 perspectives. I have had seats at all of the big tables and been a co-founder of phenomenal international and national initiatives. Dozens of others have done the same. And still, Andrea’s good question still stands – legitimize, equal footing?
I am of the mind that something simple, clear, and relevant will overrun the traditional status quo.
Until we build the table, determine the menu and the guest list, we will continue to just have a seat at their table. Accepting those seats legitimizes their table, their plans, their worldview. And, I know we need our voice in their rooms too. Just sayin’
I can add some of my papers that might be helpful:
Terry SF. The study is open: participants are now recruiting investigators. Sci Transl Med. 2017 Jan 4;9(371). pii: eaaf1001. doi: 10.1126/scitranslmed.aaf1001. PMID: 28053150.
Terry SF. Life as a numerator: putting the person in personal genomics. Applied & Translational Genetics. 2016 Feb 1;8:40-1. doi:10.1016/j.atg.2016.01.007. PMID: 27047760. PMCID: PMC4796705
Terry SF. Learning genetics. Health Aff (Millwood). 2003 Sep-Oct;22(5):166-71. PMID: 14515892
Terry SF, Shelton R, Biggers G, Baker D, Edwards K. The haystack is made of needles. Genet Test Mol Biomarkers, 2013 Mar;17(3):175-7. doi: 10.1089/gtmb.2012.1542. PMID: 23428177
Kaye J, Curren L, Anderson N, Edwards K, Fullerton SM, Kanellopoulou N, Lund D, Macarthur DG, Mascalzoni D, Shepherd J, Taylor PL, Terry SF, Winter SF. From patients to partners: participant-centric initiatives in biomedical research. Nat Rev Genet. 2012 Apr 3;13(5):371-6. doi: 10.1038/nrg3218. PMID: 22473380. PMCID: PMC3806497
Lambertson KF, Damiani SA, Might M, Shelton R, Terry SF. Participant-driven matchmaking in the Genomic Era. Hum Mutat. 2015 Oct;36(10):965-73. doi: 10.1002/humu.22852. Epub 2015 Aug 27. doi: 10.1002/humu.22852. PMID: 26252162
Terry SF, Terry PF. Power to the people: participant ownership of clinical trial data. Sci Transl Med. 2011 Feb 9;3(69):69cm3. doi: 10.1126/scitranslmed.3001857. PMID: 21307299
Thank you, Sharon!
I’ve been looking into examples of patient-led groups – including yours – who have “built their own table” in various ways.
One well-documented success story: Fran Visco and NBCC got stiff-armed by the then-director of NCI so took their Congressional funding to DOD, which created a program to include patients and carers as equals when prioritizing research questions.
One that I’m curious about: The Cystic Fibrosis Foundation was started by parents, became a fundraising powerhouse, and developed a drug development pipeline that has been immensely successful. What I don’t know (and would love to hear more about) is how involved people with CF have been in prioritizing research questions. Yes, patients are massively involved in fundraising, but does the Foundation involve them as decision-makers or -influencers?
If people know of other patient-led orgs that either DO or DO NOT involve patients as key members of the team (beyond fundraising) please share here.
Love this! I’d add Mymee to the list – a company that helps put some rigor to people’s individual investigations of what makes them feel better and worse. https://www.mymee.com
Yes! Thanks for the addition, Katie. And your company, Pictal Health, is of course a powerful tool for people to map and explore their own health history. I think it’s a way that patients can “build their own table” — you help them create a more-accurate, more-intriguing visual health record. Yes, we should continue to fight for access to the health data and records that are maintained by institutions, but wow, look at what we can build on our own!
We must stop hoping for a “seat at the table” in healthcare because we’re just legitimizing roles, priorities, and interests of incumbents.
Dana Lewis wrote this piece in 2019 as part of her Opening Pathways project with RWJF: http://openingpathways.org/patient-in-the-cage
Patients who have seats at the table can only order what’s on the menu. They legitimize legacy midsets and power structures that embrace patients with Stockholm syndrome. Raise your own funds, set your own table, start a patient registry, publish or perish. MyLymeData does this. Like many here over 40 publications, 5 patient led research studies. Patients must create their own parallel power structures–like @belikelight
I think the metaphor of only being able to order off the menu is often, but not always true. I find that my voice on the PCORI Board of Governors sometimes changes the menu. I find that my colleagues around the table including Board and staff respect, trust, listen, act , test, and adjust. After drinking Kool Aid, the challenge is to know the levers of power and use them. I don’t feel co-opted. Healthcare is a slow turning battleship. We work to make difference where we can.
I’m so sorry I’ve missed this whole series! It’s been a rough spring (and now summer).
Huge propers to all the patient allies who’ve put such gold in these comments. Absolutely on target, and I especially love Sara’s evolving GIF. (I wish there was a way to make it not look, or pause longer to enable gazing at the static image!)
To add to the pot, I’ll mention that I recently discovered Dysautonomia International, a patient-founded and -driven org that seems to have a lot in common with Lorraine’s. Super sharp, defining research priorities, and producing breakthroughs the industry had not.
I distantly remember Dana’s “Patient in a cage” post, so thanks to Andrea for bumping it. It has much deeper resonance in today’s conversations.
We are engaged in a cross-condition study now, using data from our advocacy orgs in our people-engagement cross-disease system, to offer evidence of what we are all saying here. Because I have found that as much as we each put forward our own evidence of our impact we are dismissed as being “unusual” or “unique”. There are hundreds of organizations, groups, and even single collectives of individuals in loose collective, doing what was unique years ago. Just like our advocacy organization as funders paper, we feel it will help to make the case with data and many organizations. I hope to have this finished and published in the fall.
Fantastic! I will follow with interest.
Thanks, Dave! The conversation is never over and everyone is always welcome to join when they have something to add. I’ll check out Dysautonomia International.