Communicating effectively about health disparities on #worldAIDSday

Today is World AIDS day. For me personally, it represents my second year leading qualitative research on HIV prevention and treatment. Last month, I attended two conferences that dealt with HIV in very different ways, and something began to weigh on me heavily.

In the past month, I have realized that people talk about HIV and AIDS in terms of health disparities, but laypeople and researchers alike can struggle to grasp or explain the meaning of a disparity.

I first realized this at the American Public Health Association (APHA) annual meeting, when I heard a seasoned researcher mispeak. This researcher, likely fueled by adrenaline and nerves, represented HIV as a disease that primarily affects young, black men who have sex with men. This is not quite the truth. Men, African American or black people, and gay or bisexual people are all more likely than their counterparts to contract HIV. But once you look at the overall distribution of HIV cases, you see that this single, intersectional group, while at the highest risk, is not the dominant face of the disease.

After hearing a few other researchers make similar mistakes, I looked for a graphic to show the overall prevalence or incidence of HIV and found myself in a rabbithole of information about health disparities. In my opinion, disparities are far more meaningful when coupled with population level statistics that offer some overall perspective. Coming home from the conference, I tried to explain to friends, family and colleagues what I had heard and why I was frustrated, and it struck me that many could not easily grasp the meaning of a disparity. This called to mind a common catchphrase in statistics education: “Human beings are horrible at understanding probabilities.”

This phenomenon was given increasing significance in the following days. First, I heard another researcher at APHA ask why HIV prevention messaging always targeted black MSM (men who have sex with men), and I realized that it is not because of a social need so much as because the data is reported in this way. For the African American community, which can be more prone to homophobia, this cobranding of queerness and HIV has likely slowed the involvement of community institutions, such as churches, that could serve a bigger role in HIV prevention and treatment.

A couple of days after APHA, I attended the Stigma conference Howard University. APHA is a more research focused event, while the Stigma conference bridges researchers, practitioners and community members. The Stigma conference is emotional and cathartic. At this conference, I heard testimony after testimony from people who didn’t know they were at risk, people dealing with assumptions from others about how they got HIV, people treated unfairly for the level of risk associated with them, and ultimately people struggling to balance their HIV concerns with the rampant judgement placed on being HIV positive. It struck me that a lack of understanding of the full shape of HIV has had very direct consequences in these people’s lives.

As the Stigma conference went on, participants complained about the consistent targeting of HIV messaging, including messaging from research studies, for creating a constant stream of visual portrayals of the disease as one that affects only black, gay men.

In an age where there are daily medications to prevent HIV transmission as well as daily pills to help HIV positive people live full, healthy lives, where consistent daily use of the medications usually ensures that a person is both undetectable and untransmittable (a fancy word for not contagious), stigma is one of the biggest reasons why people dont receive necessary medical attention, and ultimately an important reason why so many continue to be sick or spread the disease.

Because of misunderstandings about the full shape of the disease, some put themselves at risk unknowingly and others are unfairly labeled. This disease affects all, despite varying risk levels. Ultimately we can’t guess the status of others, nor can we guess their mode of transmission. We can only know that with proper treatment, people who are positive can lead long, healthy lives and stay undetectable and untransmittable.

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Bridging Research, Community and Practice

I want to share a call for abstracts for a very special conference. It is rare that an event bring together researchers, practitioners and community members:

 

CALL FOR ABSTRACTS

9th ANNUAL INTERNATIONAL CONFERENCE ON STIGMA

Conference Theme: “Bridging Research, Community and Practice”

 

Howard University, Washington, DC, Friday, November 16, 2018 (8 AM– 5 PM)

Deadline for Submission: Friday, September 14, 2018 by 5:00pm (EST)

 

The overarching goals of this conference are to increase awareness of the stigma of HIV and other health conditions and to explore interventions to eradicate this stigma. The conference also serves to educate healthcare providers and the general public about stigma as both a human rights violation and a major barrier to prevention and treatment of illnesses. We are looking for original work that addresses HIV or other health-related stigma (such as mental illness) to be presented as a POSTER during the conference poster session.  The Best Scientific Abstract Award recipient and the second-place scientific abstract will have the opportunity to provide a BRIEF PRESENTATION of their work in addition to the poster session. Monetary prizes will be given for the top three scientific abstracts. The Best Scientific Abstract Award recipient will receive a $500 prize, the second-place scientific abstract will receive a $200 prize, and the third-place scientific abstract will receive a $100 prize.

 

Abstract Guidelines:  Submit an abstract, with a maximum of 300 words, to Victoria Hoverman at vicki.hoverman@gmail.com and Shirin Sultana at shirin.sultana@bison.howard.edu, by 5:00pm (EST) on Friday, September 14, 2018.  Please include the full name, position/job title, affiliation and email address of each contributing author at the top of the page along with the abstract title.  Author information and the abstract title are not included in the 300-word count. First author or presenter must register for the conference if the abstract is accepted.  Notifications will be sent by October 15, 2018. These are poster presentations only, with the exception of the Best Scientific Abstract Award winner and the second-place scientific abstract winner, which are also brief oral presentations.  The first author of the winning abstracts must attend the conference to receive the prizes (or be willing to let an attending author or other representative accept the prize). Students are welcome!

 

For questions about abstracts, contact Victoria Hoverman at vicki.hoverman@gmail.com and/or Shirin Sultana at shirin.sultana@bison.howard.edu.  For general questions about the conference contact Patricia Houston at phouston@howard.edu.

The Role of Gratitude in Research

Research, as most things in life, is best approached with gratitude. In this post, I’ll share a bit about what I’m grateful for, an exercise in gratitude, and some food for thought about the role of gratitude in research.

First, here is a window into what I’m feeling grateful for.

Grateful for the challenge of research

Research can provide a challenging career. While it is possible to find positions in research that are more repetitive, most positions afford many opportunities for learning about new subject matter and new methods. Each new research question provides fresh challenges to implement. And with the body of literature and informal sources available, there is always the ability to read more deeply about the work that others have done. I am grateful for the perpetual learning experiences that research has brought.

Grateful for the versatility of research

One of my favorite aspects of a career in research is the versatility. I’ve been able to work in neuropsychology, physics education, sociolinguistics, social media research, media measurement and in public health using a great variety of research methods.

Grateful for my colleagues

Over the years I’ve had the pleasure of working with people that I respect, learn from and genuinely enjoy. I’m grateful for their help, their wisdom, their curiosity, their enthusiasm, their support, their friendship, and their comforting awkwardness.

Gratitude for the research opportunities

I am grateful for the opportunity to study people. I am grateful for the people who agree to participate in research and who honestly share what is in their hearts or on their minds. Some opinions and experiences are easier to share than others. I am grateful for all of it. The qualitative work that I am currently involved with is often built on individual and group interviews that can be a powerful experience for the participant and the interviewer, and I am so grateful to the participants and the process for bringing this to fruition.

 

Now, let’s take a minute to Go Beyond the Gush. It is easy to get swept up in the everyday grind of research, whether because the research approval process seems unnecessarily repetitive or cumbersome, or data needs more wrangling than predicted, or the meetings seem endless and the emails, texts and phone calls seem constant, or the people working on a project are particularly difficult to corral, or the behavior that you need to observe in your research is particularly difficult to isolate, or… We can all get caught in the slog of research. But gratitude can help.

Here is an exercise:

Let’s take a minute to get very basic with this. First, think of the reasons why you enjoy your work. Then let’s take it back even further.

  • Be grateful to have a topic to research or to have the ability to find one. Be grateful for the ability to be curious and to find unanswered questions.
  • Be grateful to have the support to pursue this topic as a professional or as a student. Research costs time, money and many other resources.
  • Be grateful to have the skills to approach the topic. Think of all of the training that provided these skills. Think of the resources that are available to you to help you learn what you need.
  • Be grateful for your strength. You have the ability to tackle what comes your way.
  • Be grateful for the people who must come together to make this work happen. Sometimes we get stuck thinking of one person’s habits or quirks or in finding fault with the people around us. Some groups are more cohesive than others, and each person brings a different set of skills. Take a step back from that. Let go of it for a minute and take a fresh look. First see yourself as someone with strengths and weaknesses. Then see your colleagues in this light as well. Allow yourself to forgive yourself and others.
  • Be grateful for the challenges your work brings. Sometimes it seems to bring too many challenges. But those challenges are keeping you sharp. And in some way, they will offer you the opportunity to learn and grow.
  • Be grateful for research participants. These are the people who make our work possible by letting us into their world in some way. That is a privilege.

 

What do exercises like this gain you? A few things, really. Peace of mind. A break from the stress and an opportunity to just feel grateful. Perspective. A chance to put challenges that seem constant or insurmountable into a smaller box. The opportunity to see the people around us from a fresh perspective and hear them more clearly. A better insulation against the instability that affects us all. And an opportunity to see our research in context and think more broadly about the affect it has. The work we do affects peoples’ lives, but these basic mechanisms can become lost to us when we lose perspective. With fresh perspective and gratitude, we can better see these mechanisms in action and produce work that better respects all involved. No research exists in a vacuum, and the better we can understand the role our research plays in a wider context the better stewards we can be over this tremendous privilege we’ve been granted.

Thanks for listening.

The future doesn’t belong to big or small data. It belongs to the disruptors.

Research is evolving fast. There is less support and more doubt for traditional methods, a fast- changing set of expectations from end-users, and a fast-evolving field of nontraditional methods and approaches. The future of research does not belong to big data or small data. It belongs to the disruptors. It belongs to those that can recognize and challenge the assumptions underlying their methodologies. The future belongs to creative approaches, connected data, and collaboration.

 

Research requires listening and understanding.

In order to create research that is useful, there needs to be a deep understanding of end-users, clients, and the context of the products we create. This requires listening, understanding, and creating opportunities to learn more, both by representing end users and clients more directly in the development process and by qualitative research methods. Qualitative research provides methods of collecting and analyzing information about people, in-person, virtually and through behavioral data sources, and it must provide a vitally important role in evolving research methods.

 

Research requires ever-changing analytic capabilities and creative, open minds.

We live in an era when data is plentiful. But the data looks different from what we saw in the past. We need capable and versatile technical workers who are able to process data. And we need the creativity to put the data to use in ways that benefit end-users.

 

Research must embrace diversity.

Creative strategy and good user-focus can’t spring from echo chambers. We need to connect to divergent experiences and views early and often in order to create good products. People with divergent views can raise questions earlier in the development process and allow us to integrate holistic solutions for problems we could not have thought of alone. Diverse experiences allow us to be more creative because they provide more material to inspire us. And diversity is crucial for us to successfully compete in the global marketplace.

 

Research design must be iterative.

If we want to create new ways of analyzing and connecting data, we have to be free to experiment with new methods, test new methods, and allow end-users to test proposed solutions. Often what we create doesn’t function the way that we expect it to. In an era where data does not need to be designed and collected, we have the flexibility to find creative ideas (“ugly babies”), nurture them, test them out, and tweak what doesn’t work.

 

Silos no longer make sense in research

It no longer makes sense to separate end users from developers or quantitative from qualitative. The best disruptive, creative potential lies in the mingling of methods and people. The most useful products are the ones that can be created collaboratively.

 

Research can be agile.

Agile development has become standard practice in much of the software development world, but it makes sense for research as well. Agile teams can involve end-users, UX researchers, quantitative methodologists and qualitative methodologists. Research can be built by agile, creative teams that feel free to question and inspire each other.

 

Creating high performing teams has never mattered more.

There is a growing body of great research about what makes a highly effective team. Effective teams are empathetic and open. They consider each other’s interests. They are practical and focused on the end product. They are comfortable asking questions and brainstorming solutions. They work collaboratively, and they celebrate their accomplishments.

 

The future of research is bigger than any one person or silo. It requires us to come together in new ways. I already see some firms moving in this direction- kudos to them. A new era is here, and I’m excited for us all!

That which is bigger than us

We learn about things that are bigger than ourselves in layers, and we accomplish tasks that are bigger than ourselves one step at a time.

 

In college, this knowledge came as a revelation to me. Instead of learning, memorizing and standing atop a field of knowledge, knowledge was something that was created in pieces. Knowledge came to be about process.

 

In graduate school, I again came to relish the mystery of the analytic process through the activities of conversation analysis and discourse analysis. Over and again, I began with a small piece of data, like a conversation or a snippet of video, and watched it come to life through rounds of observation. Something that began as a digestible piece that wouldn’t necessarily attract attention became a multilayered journey into all of the pieces that comprise the situated social actions we make every day.

 

As a parent, I learned almost immediately that parenthood was bigger than me. I learned that I couldn’t be, do or know it all, and I learned that the choices and priorities I made dramatically governed the shape of my family. I learned that I could not be perfect in anyone’s eyes, and I could never measure up to every standard by which I was being measured. I learned that I was ultimately responsible for something I valued more than I had imagined possible, and that I ultimately had to accept and embrace my unique approach to the task. I could only strive to be a parent in the ways in which I was capable, and I could never fit anyone else’s vision. I learned that my shortcomings had to be a bridge of understanding to other parents, who also found themselves unequal to the task at their hands.

 

In my professional life, I’ve learned to relish the possibilities and opportunities that teamwork can bring. As a team we can achieve far more and greater things than we could ever achieve as individuals, and that which we can accomplish can be an inspiration. As a manager the most I could wish for is a team that is inspired by process and by potential, who can love the work and love the product of that work.

 

Ultimately, that’s what I wish for all things that are bigger than myself. Inspiration, pride, a love of the journey and the process- to love life and be surrounded by others who love life, in all its complications, challenges, ups and downs.

 

But all of this talk of inspiration neglects the other side of things that are bigger than us. When we make choices of where to focus our time and energy, other elements are always neglected. As a parent, I have to remind myself that I may not be a go-to mom at bake sale time, but I have other qualities to offer my kids. Even as we work to get things done there is always an undercurrent of things not getting done. And there are times when the journey ahead is more daunting than inspiring. There are the moments when all of the work we’ve accomplished becomes undone before our eyes. There are the toddlers behind us as we clean, some more and some less metaphorical, dumping toys and laughing. And there are the mountains ahead that seem to be too big to climb.

 

There is a TED talk that has been making the rounds lately about emotional hygiene. In it, the speaker talks about how we handle failure and disappointments. We all encounter failures and disappointments, small and large, every day. We conquer our to-do lists one day, only to see them build back up the next day. Sometimes our hard work is unrecognized. Sometimes our efforts are not enough. It’s one thing to love process, but what do we do when the process can’t fit the task ahead? How do we handle ambiguity? To Ignore these challenges is to undercut the complicated texture of life.

I believe that part of embracing life is to embrace the mess; to embrace that which is bigger than ourselves; to keep feeling around the darkness until we find our way; to have faith that there is a path through the darkness, to continually double back to our rocks; to embrace the challenges and embrace our core that guides us through them; to recognize the downs and the ups, and to know where within ourselves to find the strength to persevere. These moments, these challenges allow us to be hear, see and do that which is much grander than what we could see, hear achieve alone or in any immediate sense. These are the elements that give depth to our lives. These are the challenges that define our lives and make life worth living.

Understanding news consumption and production can be like understanding the air we breathe

A careful, systematic look at the way you encounter news might just dramatically change your understanding of the genre. Here are some observations about creating and consuming news in our current information ecosystem.

Creating News

News is not one size fits all, and news methodology can’t be one size fits all. This is probably a well known fact to people with more of a journalism background, but it is often overlooked by people who are newer to the field. Here are a few points that stem from differences:

– Social media can be a great source for information about breaking events that have a critical base of witnesses with internet access.

– Social media is no substitute for news that has very few witnesses with privileged access to information.

– The core job of newsmakers is to keep the public informed about unfolding events. Oftentimes newsmakers are as invisible to their audiences as the people who develop dictionaries are. The audience assumes that the major events they see covered are the objectively most-major events, often without any understanding of the curation involved. Newsmakers provide a vital public service and have a moral obligation to the public, but that obligation is far from straight forward.

– News consumers may choose to engage most deeply in the topics they are most interested in, but that doesn’t invalidate a basic desire to know what’s going on in the world. This is why I like to advocate for eye tracking as an engagement metric- the current tracking metrics don’t reflect the most basic function of the news media.

 

Consuming News

News exposure is seamlessly integrated into our daily experiences. As a child, I would watch multiple newscasts with my mom, and we would both scan the newspapers regularly. As a new parent, I visited multiple websites to collect news from different perspectives and regularly watched multiple newscasts- this seemed like an essential tie between the small world of new parenthood and the larger world outside my door. But these days I work long hours and rarely catch newscasts or have time to visit multiple news sites. Someone recently asked me which news outlets I follow, and I was surprised that the answer didn’t come very readily to me. I’ve been making a careful effort to observe my contact with news stories, outlets and journalists, and I highly recommend this exercise to anyone interested in understanding or measuring media use.

Here is some of what I’ve observed:

– Twitter is the first platform I think of when I think of news. I think of it as my own curated stream of news amidst the wider raging river of information flow. But when it comes to news stories in particular, I often hear about them not because I seek them out or curate them but because my streams are based on people who have a variety of interests. I hear about emerging news because people go off-topic in  their Twitter streams, not because I seek it out. I often value this dynamic as a kind of filter of its own, because major events enter my stream from a variety of perspectives, but the majority of news does not.

– Re: Interest-based streams- I mostly follow researchers on Twitter. As a result, I can follow conferences as they happen or read interesting articles as they come out. Is this news? What makes it news?

– Platforms morph based on the way people use them. See @clintonyates Twitter feed for an example of a journalist using Twitter to tell resonant stories in a unique way that defies traditional uses of the platform.

– Re: Instagram- I love to follow Instagrammers because I really love photography. Some of the instagrammers I follow are photojournalists. This is an area of news coverage that is rarely considered in depth. And sometimes I wonder whether these pictures are only news if they contain, and I read, captions explaining their context and importance?

– Facebook is often discussed as a news source, but it is very important when discussing Facebook as a news source to consider the social context of information. I will share news from news sources only if I think it is something I can share without harming valued personal relationships with people across many ideological spectra and backgrounds. That said, some of my friends will regularly share the pieces that I choose not to. When I see those articles from these friends I will put the articles in the context of what I’ve seen from those people in the past, my patterns with them in regards on the topic, and my social patterns with them in general.

– It is important to recognize that news items on Facebook can come from news sources, interest groups or pages, interested people, or simply from Facebook. The source interacts with the platform to create the stimulus.

– Re: other fora- There are many more news sources that I follow to varying degrees. I receive research updates and daily briefings from Pew and Nielsen, which I read with varying frequency (the only one I read every day is the Daily Briefing from the Pew Journalism Project.) I also receive e-mails from research and technical lists, lists about STEM education, community lists, blog notifications and emails from LinkedIn. I read the Sunday paper, and weekly updates from my employer, and I regularly hear and participate in discussions in my workplace and outside of it. Each of these are potential news sources that may bring in other news sources.

– These sources listed together may appear to amount to a critical mass of time, but I was not aware of that critical mass until I stopped to observe it. Our choices and actions regarding media consumption are as unconscious as many other choices I make with my time.

All of this is to say that news is as seamlessly integrated into my environment as the air I breathe, and it stems from sources of all kinds. Every story has a different way of intersecting with and co creating my own. Whereas news media has a particularly strong history of top down and one way dissemination, it is much more ubiquitous, multi-directional and part of our ecosystem now than ever before. We are consumers and participants in very different ways, and understanding these is a key to understanding and developing tools for news in the future.

 

* A side note re: pay to read. My advice to news outlets is to find a way to integrate pre-existing online funding resources (like Amazon, paypal, etc.) in a collective or semi-standardized way, so that people don’t have to provide financial information to anyone new, and so that people can pay small fees (e.g. 25 cents for a long-read or something that required a good deal of expense to produce, 5 or ten cents for smaller or shorter pieces) with a single click and pay as they go to read around a variety of sources.

Ruby slippers? The professional skills that parenthood builds

As a parent of older children, I am strongly aware of the ways in which parenthood has affected my career. I’m also aware of the many professional skills that parenthood has reinforced in me. Lately I’ve found myself discussing these skills with other parents, many of whom had always focused more on the drawbacks of parenting than on the advantages it brings to the workplace. These skills can be like our ruby slippers. They are wonderful, and we’ve developed them along the road without ever realizing what we’ve had.

For example:

1. The buck stops here.

There is a moment in (very) early parenthood when you hear your child cry and wonder what someone will do to soothe them. In the next moment you realize that you (more than anyone else on earth) are the one who is supposed to soothe the child. This is a big step in your transformation into parenthood. This sets the stage for you to advocate for your child, defend your child and soothe your child. But it also transforms you as a person, from someone who expects others to do things to someone who expects to do things yourself. The guts with which you advocate for your children should also help you advocate for yourself and your co workers, and the proactive habits you develop can permeate everything you do, both in the home and in the workplace.

2. Efficiency

Wasting time is a big deal for parents. I am happy to waste time on a kayak, at the beach, or hiking with my kids. But I am not willing to redo work that I have already done. This distinction has made me very aware of my time use and organization. Although multiple layers of checks and balances can be great, I don’t want to read the same email twice, shuffle the same piece of paper twice or spend time trying to figure out where I left off with a project- potentially redoing work that I have already done. My time feels precious, and that drives me to be significantly more organized and efficient. It also drives me to think carefully about process and streamline what I can to maximize quality and minimize unintentional duplication.

3. Prioritizing

There is more work to do than you will ever be able to keep up with. You can’t work full time or overtime and pursue professional development, and then come home and keep a perfectly clean and maintained home, cook a full meal, keep up with the laundry, spend time doing homework and teaching extra lessons, attend PTA and school events, take your kids to lessons of all kinds, do bathtime and bedtime rituals, juggle sick kids and dentist appointments, keep up with all of the bills, paperwork and repairs that arise, exercise regularly, keep up with the news and trends, pursue spiritual fulfillment, participate in your community, develop your hobbies and interests, spend time with your extended family, and enjoy leisure time. You will have to prioritize the things that you find most important and necessary. Thinking strategically about your time is also a really great professional skill that will help you to better organize your time and the time of your team.

4. Reconciling differences

The priorities that you have chosen from the list above will evolve over time, and they will be different from the priorities that others choose. Your priorities will differ from other adults’ priorities, and they will differ from your kids priorities (and their priorities will differ, too!). Somehow you will have to reconcile these differences, and “my way or the highway” will only get you so far. At work you will also find that you have different priorities than other people you work with. Managing differences in priorities is a great professional skill to have.

5. Dealing with personal conflicts

One amazing lesson of parenthood is that just when you are ready to turn and run for cover from your child is just about when you need to spend more time together. Find a change of scenery and an activity that you both enjoy, and retreat to it together. Whatever challenge you were stuck on will usually become much easier to pull through after a break. The same trap of pulling away and developing conflicts happens in professional environments. These traps can grow into irreconcilable differences if they are left to fester, but they can often be little more than small bumps in the road if they are caught and acted on early.

6. Gratitude for intellectual challenges

I love parenthood. But as much as I LOVE Boynton and Dr Seuss books, I am also very happy to balance out family time with activities that stretch my mind and make me think. Before I became a parent I took a career for granted. Of course I would always be working! But in the early days of parenthood it sometimes felt like a miracle to walk into the office on time, fully dressed, and rested enough to do my work. I am very fortunate to not only have a job that supports my family, but to have a job that keeps me intellectually stimulated and interested. I am interested in research methodology, and I am extremely grateful to be able to pursue that interest. For someone who had labeled solo trips to the grocery time “me time” for years, graduate school felt almost like a really great book club. It was an excuse to read great books, write interesting papers and have regular discussions with adults who shared some of the same interests. A career is not just a responsibility; it is a privilege.

7. Explanations, explanations and more explanations

I spent a few nights while I was in graduate school reading academic articles to my family and explaining why they were so cool and interesting. I also practice talks with my family, taking detours to make sure they understand what I’m saying. Being able to communicate about your work with any audience is a real gift. Not only does it help you develop a great understanding of your work, it helps prepare you to interact with a wide variety of people.

 
There are many more topics along these lines that I could cover, and maybe I will cover them another day. But for now I hope you’ve taken some inspiration from the advantages that parenthood brings to a career. Parenting can make you more focused, more proactive, better able to deal with an array of people, and more grateful for work and the challenges it brings. It brings challenges, but it also fortifies you.