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Social Media and Healthcare Evaluation
Program evaluation and research of social media strategies in healthcare
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The Rise of Patient Communities on Twitter - Twitter Visualized

The Rise of Patient Communities on Twitter - Twitter Visualized | Social Media and Healthcare Evaluation | Scoop.it
For over 2 years, Symplur has collected health conversations on Twitter. From a humble start, our infrastructure has grown and matured to scale with the tr
bacigalupe's insight:

For over 2 years, Symplur has collected health conversations on Twitter. From a humble start, our infrastructure has grown and matured to scale with the tremendous growth of healthcare social media. We’re now approaching 150 million health tweets in our database which we analyze and categorize by thousands of variables. And similarly with other repositories of big data, our greatest challenge is to figure out how to present insights from such a vast dataset in a meaningful way. The answer is often found in visualizations.

We plan to start a small series of short posts displaying some of this data in a visual way.

What you see in the video below is a 22-month timeline of about 2,000 different health communities and topics each visualized as a bubble. In total, about 100 million healthcare tweets are represented in this visual. The green dots symbolize patient-centric topics, while pink encompasses more professional/provider topics. Larger bubbles signify larger volume of conversations within that community. The data is visualized dynamically over the this 22-month time period starting September 2010.

 

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rob halkes's curator insight, January 3, 2013 10:13 AM

Very interesting and specifically, I like to focus on the points of switch: what triggers patients on twitter to move over to more private contexts of observations and with whom do they choose to do so. But also, the reverse: if one has private tools to communicate with care givers and/or peers, what makes them turn to public platforms..  I guess; these and others are key understandings to buikding contexts to help patient on line cope better!

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CRITICAL QUESTIONS FOR BIG DATA

CRITICAL QUESTIONS FOR BIG DATA | Social Media and Healthcare Evaluation | Scoop.it
(2012). CRITICAL QUESTIONS FOR BIG DATA. Information, Communication & Society: Vol. 15, A decade in Internet time: the dynamics of the Internet and society, pp. 662-679.

The era of Big Data has begun. Computer scientists, physicists, economists, mathemati- cians, political scientists, bio-informaticists, sociologists, and other scholars are clamoring for access to the massive quantities of information produced by and about people, things, and their interactions. Diverse groups argue about the potential benefits and costs of ana- lyzing genetic sequences, social media interactions, health records, phone logs, govern- ment records, and other digital traces left by people. Significant questions emerge. Will large-scale search data help us create better tools, services, and public goods? Or will it usher in a new wave of privacy incursions and invasive marketing? Will data ana- lytics help us understand online communities and political movements? Or will it be used to track protesters and suppress speech? Will it transform how we study human communi- cation and culture, or narrow the palette of research options and alter what ‘research’ means? Given the rise of Big Data as a socio-technical phenomenon, we argue that it is necessary to critically interrogate its assumptions and biases. In this article, we offer six provocations to spark conversations about the issues of Big Data: a cultural, techno- logical, and scholarly phenomenon that rests on the interplay of technology, analysis, and mythology that provokes extensive utopian and dystopian rhetoric. Keywords Big Data; analytics; social media; communication studies; social network sites; philosophy of science; epistemology; ethics; Twitter (Received 10 December 2011; final version received 20 March 2012)

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Red de Acceso

Por el mejor tratamiento, en tiempo y forma, para todos los pacientes mexicanos.
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Survey explores nurses’ use of e-health tools | Archived online nursing articles | Nursing Management | RCN Publishing Company Ltd

Survey explores nurses’ use of e-health tools | Archived online nursing articles | Nursing Management | RCN Publishing Company Ltd | Social Media and Healthcare Evaluation | Scoop.it
E-health is concerned with promoting the health and wellbeing of individuals, families and communities, and improving professional practice through the use of information management and information and communication technology. In autumn 2010 the RCN, supported by an information technology consultancy, carried out a survey of members’ views on e-health to assess their involvement in, and readiness for, e-health developments and their knowledge of its benefits. A total of 1,313 nurses, midwives, healthcare support workers and pre-registration students from across the UK responded. This article describes ways in which nurse managers can influence the successful implementation of the survey recommendations.
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What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards

What E-patients Want From the Doctor-Patient Relationship: Content Analysis of Posts on Discussion Boards | Social Media and Healthcare Evaluation | Scoop.it

Background: People with long-term conditions are encouraged to take control and ownership of managing their condition. Interactions between health care staff and patients become partnerships with sharing of expertise. This has changed the doctor-patient relationship and the division of roles and responsibilities that traditionally existed, but what each party expects from the other may not always be clear. Information that people with long-term conditions share on Internet discussion boards can provide useful insights into their expectations of health care staff. This paper reports on a small study about the expectations that people with a long-term condition (diabetes) have of their doctors using information gleaned from Internet discussion boards.
Objective: The aim of this study was to ascertain what people with diabetes who use Internet discussion forums want from their doctors. The study objectives were to identify what people with diabetes (1) consider their role in condition management, (2) consider their doctor’s role in managing their condition, (3) see as positive elements of their interactions with medical staff, and (4) find problematic in their interactions with medical staff.
Methods: The study used qualitative methodology to explore the experiences, views, and perceptions of individuals participating on 4 Internet message boards. Posts made on the discussion boards were analyzed using the principles of qualitative content analysis. The meanings of sections of data were noted using codes that were developed inductively; those with similar codes were merged into subcategories and related subcategories were combined to form categories.
Results: The key themes identified in the study were ownership of condition management, power issues between people with long-term conditions and doctors, and ways in which people seek to manage their doctors.
Conclusions: People with diabetes valued doctors who showed respect for them and their knowledge, and were willing to listen and openly discuss their options. Patients felt that they could and should take responsibility for and control of their day-to-day disease management. They saw doctors as having a role in this process, but when this was lacking, many people felt able to use alternative means to achieve their goal, although the doctor’s function in terms of gatekeeping resources could create difficulties for them in this respect

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Portal Pacientes Fundacion Oncologica Cancer Chile

Portal Pacientes Fundacion Oncologica Cancer Chile | Social Media and Healthcare Evaluation | Scoop.it
Sitio Web de la Fundación para el Desarrollo de la Oncología, Fundación Oncológica Cáncer Chile...
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Crear un plan de evaluación

¿Por qué se debería tener un plan de evaluación?
¿Cuándo debería desarrollarse un plan de evaluación?
¿Quiénes son los diversos tipos de interesados y cuáles son sus intereses en la evaluación?
¿Cómo se puede desarrollar un plan de evaluación?
¿Cómo se establece un cronograma para las actividades de evaluación?
¿Qué clase de productos debería esperarse obtener de la evaluación?
¿Qué clase de normas se deberían seguir?
¿Por qué se debería tener un plan de evaluación?

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W.K. Kellogg Foundation Evaluation Handbook - W.K. Kellogg Foundation

W.K. Kellogg Foundation Evaluation Handbook - W.K. Kellogg Foundation | Social Media and Healthcare Evaluation | Scoop.it
This handbook provides a framework for thinking about evaluation as a relevant and useful program tool. It was written primarily for project directors who have direct responsibility for the ongoing evaluation of W.K.
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10 tips on using new ICTs for qualitative monitoring and evaluation

10 tips on using new ICTs for qualitative monitoring and evaluation | Social Media and Healthcare Evaluation | Scoop.it

1) Perception may trump hard data

One discussant raised the question “Do opinions matter more than hard data on services?” noting that perceptions about aid and development may be more important than numbers of items delivered, money spent, and timelines met. Even if an organization is meeting all of its targets, what may matter more is what people think about the organization and its work. Does the assistance they get respond to their needs? Rather than asking “Is the school open?” or “Did you get health care?” it may be more important to ask “How do you feel about health?” Agencies may be delivering projects that are not what people want or that do not respond to their needs, cultures, and so on. It is important to encourage people to talk amongst themselves about their priorities, what they think, encourage viewpoints from people of different backgrounds and see how to pull out information to help inform programs and approaches.

2) It is a complex process

Salon participants noted that people are clearly willing to share stories and unstructured feedback. However, the process of collecting and sorting through stories is unwieldy and far from perfect. More work needs to be done to simplify story-collection processes and make them more tech-enabled. In addition, more needs to be done to determine exactly how to feed the information gleaned back in a structured and organized way that helps with decision-making. One idea was the creation of a “Yelp” for NGOs. Tagging and/or asking program participants to tag photos and stories can help make sense of the data. If videos are subtitled, this can also be of great use to begin making sense of the type of information held in videos. Dotsub, for example, is a video subtitling platform that uses a Wikipedia style subtitling model, enabling crowd sourced video translations into any language.

3) Stories and tags are not enough

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Mobile Health 2012 | Pew Internet & American Life Project

Mobile health has found its market: smartphone owners

Fully 85% of U.S. adults own a cell phone. Half own smartphones, which expands their mobile internet access and enables mobile software applications. This report will provide details about both groups—people who own a cell phone of any kind and the smaller group of people who own smartphones.

One in three cell phone owners (31%) have used their phone to look for health information. In a comparable, national survey conducted two years ago, 17% of cell phone owners had used their phones to look for health advice.

Smartphone owners lead this activity: 52% gather health information on their phones, compared with 6% of non-smartphone owners. Cell phone owners who are Latino, African American, between the ages of 18-49, or hold a college degree are also more likely to gather health information this way.

Health status also plays a role. Caregivers, those who recently faced a medical crisis, and those who experienced a recent, significant change in their physical health are more likely than other cell phone owners to use their phones to look for health information.

Texting is nearly universal, but not for health

A whopping 80% of cell phone owners say they send and receive text messages, but just 9% of cell phone owners say they receive any text updates or alerts about health or medical issues.

Women, those between the ages of 30 and 64, and smartphone owners are more likely than other cell phone owners to have signed up for health text alerts.

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¿Que es Medting? Vídeo

Breve presentación de Medting en Castellano (Evento Teleictus). Plataforma para compartir casos clínicos, imágenes y videos médicos. Integra SNOMED y Pubmed. Plataforma de conocimiento y telemedicina, red social para médicos. La versión enterprise permite crear espacios privados y exclusivos para organizaciones y grupos de trabajo.


Via Ignacio Fernández Alberti
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Elderly still not using apps for health, but tomorrow’s seniors might | mobihealthnews

Elderly still not using apps for health, but tomorrow’s seniors might | mobihealthnews | Social Media and Healthcare Evaluation | Scoop.it

"As baby boomers age, many are taking greater control over their own healthcare than any generation before them, and mobile technology is be a big part of that movement. But today’s elderly might not be interested in gadgets and apps.

 

“Seniors aren’t using apps for health,” healthcare technology consultant and futurist Mary Cain, managing director of San Francisco-based HT3, said at last week’s Health 2.0 Conference in that same city. In fact, that’s pretty much how Cain led off a session she moderated on digital tools for healthy aging, in case any of the many startup companies and venture capitalists in attendance had any wrong ideas." (...)

 

"While I admittedly don’t talk to as many poor, uneducated people as I perhaps should in this line of work, just about every 60-something I know now has a smartphone and is just as willing to download apps and send text messages as younger adults. But that’s not so much the case with those over the age of 80. That might change as the boomer generation hits their 70s and 80s in the middle of next decade, but I can’t imagine my 93-year-old grandmother ever having a smartphone.

 

(You may remember that I was looking for home monitoring technology for her earlier this year, but my family determined that even the most basic touch-screen tablet would be too confusing for her. We were leaning toward a “passive” wearable monitor that would automatically summon help in case of a fall, but we eventually moved her into an apartment building where all residents are issued “active” monitoring pendants that require the wearer to push a button – not exactly practical when the person is unconscious or disoriented. Old, tired technology that somehow is considered acceptable, just like so many other aspects of healthcare. But I digress.)" (...)


Via Richard Meyer, Agathe Quignot, dbtmobile, Camilo Erazo
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Redes sociales y ciencia

Herramientas útiles para crear una red social sobre I+D en e CURSO DE COMUNICACIÓN CIENTÍFICA PARA INVESTIGADORES EN SALUD del Instituto de Salud Carlos II...
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What Patients Aren't Telling Their Doctors

What Patients Aren't Telling Their Doctors | Social Media and Healthcare Evaluation | Scoop.it
I was struck by the number of patients who had patient blogs and the reasons why they turned to the social web.
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Webicina.Com • PeRSSonalized Medicine

Webicina aims to help physicians enter the web 2.0 era with quality medical information and selected online medical resources. PeRSSonalized Medicine is the simplest, free, customizable, multi-lingual aggregator of quality medical resources in social media. Please let us know if you have suggestions and watch the tutorial.

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Twitter Map See and visualize twitter users tweets overlayed on a map

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72 percent of european online consumers are Social Health users

72 percent of european online consumers are Social Health users | Social Media and Healthcare Evaluation | Scoop.it

72 percent of European online consumers (ages 18 and older) are social health users*. According to the new Cybercitizen Health® Europe 2012 study from healthcare market research and advisory firm Manhattan Research, 44 percent of European online consumers used social networking websites for health, 33 percent read or posted patient testimonials and 34 percent used health ratings or reviews. The study surveyed 3,020 consumers (ages 18 and older) in France, Germany, Italy, Spain, and the United Kingdom online in October 2012, on their use of digital media and technology for health and its influence on treatment and product decisions.

 

Additionally, the study found that adoption of social media for health varies by country. For example, compared with the other surveyed countries online consumers in Spain and Italy are most likely to use Facebook for health, while health ratings and reviews see strongest adoption in Germany.

 

Social health users by country (percent is among those who are online in each country):

 

* All EU: 72 percent
* Spain: 83 percent
* Italy: 82 percent
* Germany: 76 percent
* France: 71 percent
* United Kingdom: 56 percent

 

“A large share of EU consumers is accessing health information from social feeds,” said Principal Analyst Christina Anthogalidis. “Although dedicated health communities have been struggling for consumer participation for years, health threads on general platforms are finally driving the adoption of social health feeds. We believe this finding is pointing at a significant shift in the EU online health content market.”

 

*Social health users have conducted any of the following activities online for health within the past 12 months: used a community, group or social networking website, or conducted any social-related activity online such as reading or posting on health blogs, message boards or health ratings websites.


Via Andrew Spong
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(Crowd)Funding Patients to Attend Medical Conferences?…Now That’s a Great Idea - The Doctor Weighs In

’m a physician and have spent a lot of time over the years attending Medical Conferences talking to my colleagues about stuff we can do for and to patients. As I look back on these meetings, I must say, with few exceptions, the folks we were talking about – the patients – were not there.

Here’s a recent example. I attended a Patient Engagement panel at a big conference on Accountable Care Organizations in Washington DC this summer. There were four speakers and a moderator – all health care people – not a patient in sight. Imagine spending an hour or so debating how to engage patients when there were no actual patients on the panel. Pretty funny, except it isn’t.

Some folks would argue that we are all patients, so why do we need more patients to attend medical meetings. Because, I would argue, even though I am a patient and my doctor and nurse friends are patients, we are also health professionals. We understand the jargon. We know what to expect from the illness and the treatment. We know how to work the system. And, probably most significant of all, our doctors know we are doctors and nurses and they treat us differently.

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5 ways to start engaging patients on social media | Articles | Main

5 ways to start engaging patients on social media | Articles | Main | Social Media and Healthcare Evaluation | Scoop.it
We like this tip: Listen. See what this communicator learned at #mayoragan.


(...)


"5 ways to start engaging patients

Listen more than you speak: It’s an easy enough adage. Social media is a great monitoring tool. Yes, you should be tweeting and posting relevant important information about your hospital or health system, but remember to listen. Use social media as a way to connect directly to your users—there’s nothing between you but a screen.Have a great story to tell: You don’t always need to have a super touching narrative to tell, but have stories in your back pocket you use to engage people. As human beings, we have an aching need to connect. Don’t forget how you learned your earliest lessons about life—from stories. Make sure you are using different types of stories as you engage with your communities.Focus on your content: Content is a BIG word for a much smaller word—information. Think about it. When you hear content, you probably get nervous. When you hear information, it’s an easy, familiar concept. So remember, your content is simply information molded into a recognizable content type for your users. Ads, direct mail, press releases, tweets and posts—they are all versions of content that people instantaneously recognize. Work this and choose the right type of content to best serve the story.Hire a community engagement manager—NOT a social media person: What I hear is that most hospitals want to hire a social media “guy” or “gal.” What you need is someone who understands how to transform your hospital’s online social activities into a community. Then the engagement part needs to happen by LISTENING to what patients, families and visitors want and need.Encourage teamwork: Community engagement is really the intersection of several different parts of an organization: marketing, PR, customer service, crisis communications and emergency response. Work with other people in those departments: ensure you are delivering the best possible experience for your customers as they engage with your brand using these technologies.
Via Camilo Erazo
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¿Cómo ayuda la evaluación en la prevención del VIH?

La evaluación puede integrarse en todas las fases de planificación y ejecución de una intervención.

Antes (evaluación formativa, valoración de necesidades): Para entender el contexto de las vidas de los miembros de la comunidad y lo que los pone en riesgo, cómo evitan el riesgo o qué recursos necesitan para reducirlo y mantener la salud y el bienestar. Esto puede ayudar a darle forma al programa y proveer datos basales que ayuden a medir cualquier cambio.
Durante (monitoreo y evaluación del proceso, control de calidad): Para averiguar exactamente qué sucede en la práctica y si el programa opera tal y como fue planeado; para documentar las interacciones con los participantes; para identificar los componentes que sirven mejor y para saber si el programa satisface las necesidades de los participantes. Esta información puede ayudar a desarrollar cambios al programa.
Después (evaluación del impacto y los resultados): Para determinar si el programa tuvo algún efecto a corto y a largo plazo sobre los participantes, sus parejas y familias, sobre el personal del programa y la comunidad. En ese momento, el personal puede reevaluar los objetivos del programa y aprovechar los datos obtenidos para refinar más los programas.

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Regulating Human Subjects Research in the Information Age: Data Mining on Social Networking Sites by Lauren Solberg :: SSRN

Regulating Human Subjects Research in the Information Age: Data Mining on Social Networking Sites by Lauren Solberg :: SSRN | Social Media and Healthcare Evaluation | Scoop.it

In the 1970s, the Department of Health, Education & Welfare promulgated the first regulations governing research with human subjects. Currently, the Department of Health and Human Services regulates both biomedical and behavioral research with human subjects through 45 C.F.R. § 46, but these regulations have not been revised to address the advances in technology that have changed the ways in which human subjects research is conducted in the 21st century. One of these advances includes researchers’ use of the Internet for various research purposes, including recruiting subjects for their studies, as well as mining data on social networking sites. The issue of data mining on social networking sites for research purposes is becoming more important as researchers in a number of academic fields are collecting research data in this manner. The question of whether such research involves “human subjects” as the term is defined in 45 C.F.R. §46 is important because the answer dictates whether or not such research is subject to federal regulation and oversight.

The U.S. Department of Health and Human Services’ Office for Human Research Protections (OHRP) has previously acknowledged an increased use of the Internet for research purposes, but it has not published any guidance about how the Office understands the issue (nor have any applicable specific regulations been promulgated). Such guidance, and particularly guidance that addresses the use of social networking sites for research purposes, is becoming increasingly more important as researchers are expanding beyond just Facebook and MySpace to recruit research participants and collect data. Furthermore, new social networking sites such as PatientsLikeMe.com are changing the ways in which both behavioral and biomedical researchers recruit and interact with study participants.

This article identifies three key research activities that any new guidance that the OHRP publishes about Internet research should address: (1) the use of the Internet (including social networking sites) to recruit subjects; (2) the use of the Internet to collect personal information via direct interaction with site users; and (3) the collection of personal information from the Internet for research purposes without direct interaction with the owner of the information, i.e. data mining. It further explores recent case law that says that there is no reasonable expectation of privacy with respect to information posted on social networking sites, and discusses the history of privacy in the federal regulations governing research with human subjects. This article concludes that in light of the changes in online social networking and resulting changes in expectations of privacy, as well as the consideration that the Department of Health and Human Services is giving to revising 45 C.F.R. § 46, guidance – or even new regulations – should be drafted that address these key research activities. It furthermore suggests language that would inform researchers and research institutions whether each of these key research activities is subject to the regulations governing research with human subjects.

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Digital revolution lights up Africa with maps, mobiles, money and markets

Digital revolution lights up Africa with maps, mobiles, money and markets | Social Media and Healthcare Evaluation | Scoop.it
In Africa, necessity is the mother of invention. Instead of sharing photos on Instagram or hobbies on Pinterest, you are more likely to find a service to send money to a rural relative, or to monitor cows' gestation cycle, or for farmers to find out where they can get the best price for their goods. Technology in Africa is foremost about solving problems rather than sharing social trivia, about survival rather than entertainment – although these are flourishing too.

South Africa hosts the third annual Tech4Africa conference, in Johannesburg on Wednesday, attracting innovators and entrepreneurs from a dozen countries. Among the speakers are Sim Shagaya, a Nigerian-born Harvard graduate planning to create the "Amazon of Africa, selling Lagos's increasingly affluent consumer class everything from refrigerators to perfume to cupcakes". His previous venture, DealDey, which offers Groupon-style deals, is now the top-grossing ecommerce site in Nigeria with 350,000 subscribers.

The forum will also be addressed by Mbwana Alliy, the Tanzanian founder of an Africa-focused technology venture capital fund, and Verone Mankou of Congo-Brazzaville, who designed a tablet computer that sells for a third of the price of the iPad. Mankou, 26, has also launched an African smartphone, the Elikia, which means "hope" in the Lingala language.

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CureTogether Blog » Infographics Crowdsourcing effective/popular mental health treatments

CureTogether Blog » Infographics Crowdsourcing effective/popular mental health treatments | Social Media and Healthcare Evaluation | Scoop.it
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danah boyd | apophenia » omg girls’ bodies are fascinating: embracing the gendered side of quantified self

danah boyd | apophenia » omg girls’ bodies are fascinating: embracing the gendered side of quantified self | Social Media and Healthcare Evaluation | Scoop.it

Ever since I broke my neck as a teenager, I’ve had a love-hate relationship with my body. Truth be told, I’d much rather be a cyborg or a brain on a stick. I prize my brain, but the rest just tends to get in my way, break down, or reach annoying limits that irritate the hell out of me. I know, I know.. this is a terrible way to think about it – and doesn’t actually make any sense given that the brain isn’t separable from the rest of me – but this is my sci-fi fantasy. So shhh.

Two years ago, when my body went to hell and I spent months in a whirlwind of migraines, vertigo, fatigue, and all-around misery that doctors couldn’t diagnose, I turned to tools and techniques coming out of the quantified self movement in an effort to get some form of insight. I got obsessive about tracking every substance that went into my body, experimenting with what types of food had what affects on my health. I tracked the symptoms I was experiencing, my menstrual cycle, and my weight. I used a Fitbit to keep tabs on every step I took and to monitor my sleep. (I also did a genetics map through 23andme, but purely for curiosity.) I started seeing patterns in my health and found the patterns really helpful as I experimented with non-invasive, non-chemical solutions to my various body woes.

As I explored different services and tools out there, I found myself resisting two classes of quantified practices: 1) anything that got framed around “dieting” and calories; and 2) anything that got described as being about fertility. In short, I wanted nothing to do with the practices that were gendered feminine. Y’see, one of the manifestations of my feminist-y anger with our body image-obsessive culture is to want nothing to do with calories or dieting or other activities that position the female body in an objectifiable state. I used to rebel against these norms by shaving my head and drinking 2 liters of Mountain Dew a day, but both of those practices mysteriously lost their charm in my 20s. Odd, right? ::groan:: Meanwhile, fertility just seemed alien to me. Completely unfairly, I associated fertility tracking with aging women desperate to get pregnant and I didn’t want to frame myself as such.

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