Can mHealth help save lives? Dr. Beth Payne’s research is exploring the use of mobile devices to aid decision in high-risk situations.
Over the past several years, Dr. Payne’s work has centred on finding a way to reduce the risk of adverse maternal and neonatal outcomes from hypertensive disorders in low and middle income countries.
The only way to start resolving pre-eclampsia, Dr. Payne explains, is to deliver the baby and the placenta. However, while delivery might save mum, it might not always be the right choice for baby. The PIERS models, which were the foundation of her PhD work, are a set of clinical risk prediction models to help identify women with a hypertensive disorder (like pre-eclampsia) at risk of severe complications in the next 48 hours.
Dr. Mark Ansermino, a BCCHRI investigator, who was also working in South Africa using mobile technology to deliver health services. His project inspired Dr. Payne’s team to consider the possibility of converting the PIERS models into a simple mHealth app that nurses and community healthcare workers could use to assess women’s risk, and then determine whether the necessity of delivery to save mum outweighed the potential for adverse outcomes for baby. This work resulted in PIERS on the Move, an app-based decision making tool for community-based healthcare workers, which was put to the test through the CLIP Cluster randomized control trials.
Ultimately, the use of the PIERS on the Move app did not make a difference in mortality and morbidity for women and babies. However, Dr. Payne explains that despite their null finding, the app played an important role in the community.
Through mixed method evaluation with community-based healthcare workers and supervisors in the healthcare system, she learned that the use of the app led to community-based healthcare workers feeling more respected by formal healthcare workers and the community, and more confident in communicating with medical language. They also said the app was easy to use.
“mHealth or eHealth interventions by nature are complex,” Dr. Payne explains. “They’re working on the individual level because they’re changing behaviour, health-seekng behaviour, and care pathways – but they’re also working at the systemic level. So, you can design and evaluate at both of those stages, and really have the opportunity to create some really unique knowledge and change.”
Dr. Payne’s new project is also in collaboration with Dr. Ansermino and Dr. Matt Wiens. Together they are building off the PIERS on the Move experience to develop “Smart Discharges for Mom and Baby.” This project, based in Uganda, will look at the risk for women and their babies after delivery. The team hopes to take lessons from PIERS on the Move to develop technology that is not only successful, but that is also successful in saving lives.
You can learn more about Dr. Payne here. Results from PIERS on the Move will be submitted for publication in the coming months.
#LifeAndLoveWithHIV is an online space for women living with HIV to reclaim their sexuality and shift the narrative from risk to pleasure. For Digital Health Week, we spoke to Drs. Angela Kaida and Allie Carter and writer Wynne ST about the project and what it’s like to navigate the world of digital health.
Last year the #LifeAndLoveWithHIV team received a Michael Smith Foundation for Health Research Reach Award to launch a social media campaign. To date, the research team has recruited and supported twelve feature writers from around the world who have covered a diverse range of sexual health topics from the perspectives of women living with HIV, including stigma, orgasm, pleasure, dating, motherhood, and #UequalsU. The pieces have included a variety of personal narratives, short fiction, reflections of recent scientific findings, or advice created by and for other women.
Dr. Kaida explains that the use of a digital platform has enabled a type of ‘citizen science’ – a collaboration between scientists and community leaders to translate research into powerful personal stories and visuals that can resonate with people in meaningful way. Writers are paired with a mentor (either another woman living with HIV or a researcher) who helps with editing, style, and fact-checking where necessary to ensure that any sexual health information is evidence-based. Even more importantly, this is about community capacity building. The team meets regularly via Skype to debrief and support one another across continents.
“Our project fits really nicely at the intersection of technology, online media, art, science, and community activism” adds Dr. Carter. “Sometimes there’s a lot of tension between all of those worlds, but when they align, it can also make for a really transformative project.”
“When we’re talking about positive sexuality and HIV together – those are just two topics that don’t get a lot of air-time from this positive perspective, and so having an online digital space to do it is disruptive… It allows that conversation to happen and come out from the shadows.”
“We are required to have this legal disclaimer stating that we can’t be held accountable for the health information on the site, that users shouldn’t consider the information as health guidance, and other similar statements. That surprised us, considering our explicit commitment to being evidence-based and because the internet is glutted with health and “wellness” websites which provide pretty shoddy and sometimes harmful health-related information that don’t have the same requirements. We couldn’t help but wonder if the double-standard was related to our focus on women, HIV, and positive sexuality,” says Dr. Kaida.
“The larger message here is that when you’re pushing into new spaces, sometimes the infrastructure is actually not set up to know what to do about you.”
The process of digital storytelling has been transformative for the research team and for the writers. Wynne ST, one of the women recruited to write for #LifeAndLoveWithHIV, shared a powerful quote about how writing for the site helped her unpack some of her own fears about sharing her story:
My biggest fear about writing publicly about sexuality and relationships was what if people know I am not having sex… How do I write about sex if I am not having any? …Over time and several articles, I realized it was as valuable an insight as having sex all the time, and not nearly as uncommon as I thought. Sexuality, identity, orientation, learning the language, building my courage, baring my soul, each article became another lesson about learning sexuality, whether or not I was having sex wasn’t the biggest takeaway. There were scary moments, depending on the topic and article. But as each article was published, I became more confident – it didn’t matter as much what people thought, it mattered how I felt about sharing. The shame and self-consciousness became less and less, and I realized I had the support of a global community of women supporting me telling my story.
This global community is an important part of #LifeAndLoveWithHIV. Over the past year, the website has had more than 3,800 unique visitors of all ages from around the world, averaging over 500 visits per month. Visitors come from more than 50 cities, mostly in the USA, India, Canada, the UK, Pakistan, Kenya, Australia, South Africa, Germany, and Nigeria.
But, with visibility comes risk. The team spends a lot of time considering the ethics around their work, especially how to mitigate harms. Some women choose to use their real name and photo, others write anonymously and use a graphic to represent themselves.
The team regularly engages women in reflexive discussions about why they want to share their story, what risks are involved, and whether their feelings on making a piece publicly accessible might change in the future. They also worked together with writers to develop care guidelines to help navigate some of these issues, as well as to guide writers on ways they can support each other.
Everyone on the team signs a contract, which includes agreements about privacy, confidentiality, and releasing articles to the public. Participation is 100% voluntary and writers can remove an article at any time.
“We all know the internet can be an ugly place, especially for women. When our writers bravely choose to share their truths on our public platform, they can become targets of trolls who think people care what they have to say” says Dr. Kaida. “We continue to revisit and update our guidelines to protect the writers so that we can continue holding space online to talk about difficult and necessary topics.”
“So far, we haven’t had any problems… we haven’t had any instances of cyberbullying or anything like that. We also haven’t gone viral yet,” Dr. Carter points out. “I think that the more people you reach the more risk that you could open yourself up to critical views. But, so far it’s been a really positive experience for everyone involved.”
Dr. Caroline Sanders and her team are in the midst of undertaking their second digital health project, DSDTransitions.ca. In the lead-up to Digital Health Week we spoke to them about their experiences in the digital health space, and their ideas about harnessing technology to empower patients.
Dr. Caroline Sanders, Associate Professor and Coordinator of Graduate Programs in the School of Nursing at UNBC, has completed her first phase of research leading an international team which sought to address the needs of women with congenital adrenal hyperplasia (CAH). Drawing on existing literature and information available through hospital sites, her team began developing a list of key issues for women living with CAH, which was then expanded upon and validated by women living with the condition. These findings were used to create an infographic, website, and eventually a video funded by the Michael Smith Foundation for Health Research.
Her new research seeks to better understand experiences within the healthcare system from the perspectives of people living with Differences in Sex Development (DSD, or intersex variations), as well as healthcare providers. This project, funded by the Canadian Institutes of Health Research, has just begun, but the team is already thinking big about how digital health can play a part in reaching, learning from, and informing key stakeholders.
The process of creating a web-enabled tool for disseminating information has been filled with learning opportunities – beginning with how to decide what medium is most appropriate for a given project. When thinking digital dissemination, social media probably comes to mind. But, for a population that regularly faces discrimination, it wasn’t a natural fit.
“It is nice to have a non-Facebook platform for some people that want information but don’t want to be accessing it through something with their name on it,” explains Leigh Crawford, a Canadian policy analyst and UNBC Research Assistant. Websites are also more easily updated than traditional print materials, like informational booklets, adds Dr. Nina Callens, a collaborating Psychologist and researcher from Belgium.
Further to these issues, privacy and data security are increasingly common concerns.
“People are concerned about the security of their data. By developing a website, we can host [their data], we can own it,” explains Dr. Sanders. This also means that the website is not subject to commodification or commercialization, which could compromise patients’ consent, explains Dr. Tiffany Jones, an Australian collaborator and Associate Professor at Macquarie University.
Dr. Sanders and her team are collaborating with a company in Northern BC, called DUC Design, to design the site. Collaborating with a local development company has meant that they are able to work closely with the developers to iron out details that might not be at top of mind for those new to digital platforms, like domain names, site maintenance, copyright and ownership, and how to ensure that content is mobile-friendly and downloadable.
CONSIDERING THE LIMITATIONS
“[A] digital health platform is useful, but there [are] still areas we need to be really mindful of,” explains Dr. Sanders. “If you think about the Rural North, you know digital health won’t work great if they don’t have the internet.”
Further, the team explains how issues with access extend beyond geographic location. They describe how a patient in the Rural North might rely on a shared resource – for instance, a public library computer – to access a digital health tool. Dr. Sanders wonders whether people have been provided with the digital literacy required to know that they may want to delete their browser’s cookies, or other sensitive information that may have been logged on a public computer.
“We take for granted that we have our own [technology] and [that] no one else will be looking at our search history. If [people are] using communal spaces to access the internet and digital stories we need to think about that, too.”
THINKING BIG ABOUT DIGITAL OPPORTUNITIES
Beyond the scope of their current project, the team is thinking about other ways they can harness digital technologies to address patients’ needs. One area they’re particularly interested in relates to patients’ access to their own healthcare narrative. Women with DSD might not know their complete medical history and resulting healthcare needs.
“Which is complex,” Dr. Jones explains, “because our data so far is suggesting that very young people or parents — who are not yet sure how they feel about these conditions or variations — are becoming the knowledge holders and the knowledge providers to their future healthcare providers, without the knowledge of basic anatomical features they have or don’t have, or what surgeries were actually performed or not. There’s all sorts of astounding gaps in what is provided to them, and yet astounding expectations of what they’re supposed to be able to tell their next healthcare provider.”
“I’ve heard conversations with healthcare providers before about [how] ‘it’s [the patient’s] responsibility to come and teach me because [they] may be my only patient in my cohort that I know who has this condition,’” adds Dr. Sanders. “But, if we’ve not given people access to their health [records] then I don’t know how that’s even possible…I’ve met people who’ve said ‘I’ve gone [into] the healthcare profession with this condition because I wanted access to information I couldn’t get… so I can access [medical papers] in my education so that I can learn about me.’”
For many people, the experience of retelling past medical history can be a traumatizing experience. Dr. Sanders describes developing a way to share digital narratives about patients’ health in order to relieve patients and their families of that burden.
“I think about all the children that I’ve had the privilege of knowing, and their families all say ‘I get so fed up of giving you the same story’…Those people are telling and telling and telling [their story] because they may meet a new junior doctor, they may meet a specialist, they may meet a new nurse… Whoever they meet is new, and they have to recount it.”
Further, Drs. Sanders and Jones explain that for those with disabilities or with mental health concerns, the added pressure to recount the right details at the right time for each provider may not be possible. This type of work – though still just an idea they are grappling with – could have applications beyond the scope of DSD.
Whether considering their future research ideas, or their projects at hand, the team is driven by the needs of people living with DSD. They admit that an online presence has definitely opened them up to criticism and feedback from the community – but that they welcome it.
“We know [that with] this topic area there’s so much to learn, and we know there are so many contentious issues…so it’s also about accepting criticism and being prepared to take it humbly,” Leigh says. “You should expect criticism, because if [you don’t receive it], how are you learning?”
Dr. Sanders explains that this criticism might be upsetting, especially when you as a researcher are trying to come from a place of understanding and compassion. She suggests identifying supports you can turn to, as opening yourself up online can be a vulnerable process.
FINAL WORDS OF WISDOM
Ultimately, the team’s advice on undertaking a digital health project is to have fun and be creative. Other advice includes:
Knowing who will take care of technical work, and for how long
Always get a cost quote – and add 10-15% for unexpected costs
Social media is inescapable. If you have capacity to extend your work to multiple platforms, consider engaging your audience there as well
Understand your contracts, especially when it comes to data ownership, hosting, and what will happen if your hosting provider changes
Companies you work with will likely have a grasp on things like copyright – but you may want to brush up, too
Today the Women’s Health Research Institute is excited to announce the launch of a new five-year Strategic Plan.
The 2019–2024 Strategic Plan was informed by an extensive, mixed methods, stakeholder consultation, which took place from April 2018 to January 2019. The consultation engaged WHRI staff and Members, Patient and Community Partners, as well as key women’s health research stakeholders in BC, such as, academic, funding, and health authority partners. The process was comprised of focus groups, planning sessions, individual interviews, and a full day facilitated discussion. The process was facilitated by Sam Bradd and the Drawing Change team with Yolanda Liman as the Graphic Illustrator. The outcomes were synthesized and presented to the WHRI scientific advisory group, who, further identified priority actions with the core WHRI executive. Writing was assisted by Karen Gelb and Sarah Robins. The inclusive and transparent approach to developing our strategic plan reflects our commitment to be an institute shaped by the needs and vision of its members and community and our innate desire to effectively meet their needs.
In addition to the four priorities outlined in our plan, we have developed three new strategic frameworks to guide our work in the areas of: (1) partnership engagement; (2) patient engagement; and (3) knowledge translation, over the next five years. Our final strategic framework on trainees and mentorship is forthcoming.
Further, Dr. Gordon is the author of multiple letters calling for updates to guidelines and screening practices in publications like the Canadian Medical Association Journal (February 2019, May 2019), Canadian Family Physician (July 2019), and JAMA Oncology (August 2019).
In honour of Breast Cancer Awareness Month, help continue to raise awareness about breast density, breast health, and breast cancer screening. Check out some of these pieces and share them with your network.
On September 23rd the WHRI co-hosted an event with BC Women’s Health Foundation, welcoming Dr. Jen Gunter for a fireside chat with Dr. Lori Brotto.
Dr. Jen Gunter is an OB/GYN who has amassed a large following across the internet. An expert in all things vagina, Dr. Gunter is an excellent example of the importance of Knowledge Translation (KT). For the past several years, Dr. Gunter has been using her blog and social media (@DrJenGunter) to debunk women’s health myths and demystify the female anatomy. She has since started writing two columns for the New York Times where she discusses everything from personal grooming trends to STIs, a CBC Gem show (Jensplaining), and now a bestselling book entitled The Vagina Bible – which has already been reprinted five times in Canada.
Dr. Gunter’s first brush with internet fame can perhaps be traced back to her work to take down Goop, Gwenyth Paltrow’s wellness brand. By calling out their lack of scientific evidence and potentially harmful advice and products, Dr. Gunter has established herself not only as an authority on and advocate for women’s health, but also as a public figure that makes learning about women’s health entertaining.
At the event’s close, she made a powerful statement that will surely resonate with the research community:
“The wellness industry is a $4 trillion industry, and most of it is from women. Imagine if we had $4 trillion towards women’s health research.”
She prompted the audience to think about what the landscape of women’s health research might look like if instead of turning to expensive supplements, a woman donated money to an organization like BCWHF, which/that/who funds research.
These staggering numbers should illustrate the dire need to educate society properly – about the female anatomy, about the lack of scientific evidence for wellness products, and to empower women with accurate resources that they can turn to when they have questions.
For the research community, Dr. Gunter, is a great example of impact beyond scientific publication.
On World Menopause Day, we’re chatting with Shirley Weir, Founder of MenopauseChicks.com, WHRI community partner, and fierce women’s health advocate.
Q: Can you tell us a little bit about Menopause Chicks and what inspired you to start it?
A: My perimenopause journey began a little over 10 years ago. I was experiencing anxiety & depression for the first time in my life + sleep deprivation and brain fog that was impacting my ability to be the mom and daughter and partner and entrepreneur I always was. I wanted to feel empowered about my health, but I set out without a plan.
Some days I felt good and didn’t think about it. Some days I felt so bad, I could barely function.
I spent money on books. Lots of books. I spent a ton of time surfing the Internet (often at 3 a.m. when I was wide awake.) I talked to my doctor. I went to a naturopath. And a women’s health clinic. I bought vitamins. I dabbled in yoga, meditation and various exercise and weight management approaches. Heck, I even started a website, held events and wrote an e-book…
I was left feeling confused, overwhelmed and alone. You may feel some of these things too.
The truth is, sometimes a single book or event or doctor’s appointment is not enough. Sometimes we need more info…more clarity…sometimes it takes a bit more time and support to let it all sink in…to get it all straight…to find out what is best for our own unique situation. And often, so often…when we read something or hear something, we have questions…lots of questions, but no where to ask them.
This inspired me to launch Menopause Chicks, a website and online community. We empower women to navigate perimenopause and menopause with confidence and ease. We do this by connecting women to the best information, the top women’s health professionals who can support them on their journey–and we connect women to each other via this private community.
Q: Over the past several years Menopause Chicks has grown a lot, on and offline! You’re now one of the Women’s Health Research Institute’s community partners – what does this mean to you?
First off—I am so honoured and proud to be connected to the WHRI. Research—women’s health research—and disseminating quality health information to women—is paramount to being able to achieve our mission (which is to empower women to navigate perimenopause-to-menopause (& beyond!) with confidence & ease.
I love the role WHRI and it’s researchers play in our community. There’s a phrase I was introduced a few years ago called “knowledge transfer.” Everyone talks about how we live in the information age—but what good is information if a) it’s wrong or misleading (which has often been the case in women’s health!) and if b) we don’t have experts who can transfer new information, new findings and new, relevant health education to women so she can be empowered and in charge of her own health! Kudos to Dr. Lori Brotto and her team for taking this knowledge transfer role so seriously—it’s truly making a difference to how women view and talk about their own midlife health!
Programs like free community events on aging well and campaigns like #ItsNotInYourHead are validating women’s experiences. And they are empowering women to realize they are not alone; affirming they are smart and savvy and they can get through anything when they have accurate information and a strong health team working on their behalf.
Q: World Menopause Day is about raising awareness for support, treatment, and research in the area of menopausal health. Do you have any call to action for our community (researchers, healthcare decision makers, clinicians and practitioners)?
I sure do! (And it might surprise you!) My call-to-action for World Menopause Day this year is to media, marketers and even to some members of the medical community: STOP talking about perimenopause and menopause…until you have your facts straight. Otherwise, you’re ruining a woman’s ability to get informed, advocate for her own health—and yes, you’re even ruining a woman’s ability to ENJOY this phase of her life.
Here’s what I mean:
For decades, we’ve all been subjected to myths and misconceptions around menopause. It’s time to draw a line in the sand and ensure that whenever we do talk about menopause, we are speaking from an informed, knowledgeable place—otherwise, we continue to perpetuate misunderstanding and continue to confuse women who are trying to be proactive with their health. Here are three examples:
Don’t say menopause if you mean perimenopause. They are not the same thing. It has been very confusing for women to hear the word menopause when they still have a period. Menopause is one day—it’s the 12 month anniversary of the final menstrual period. Every day after that is post-menopause. And the phase of life leading up to menopause—is called perimenopause. The term perimenopause was only coined in 1996! But it’s now 2019 so we need to ensure everyone is using accurate definitions. The experiences of perimenopause are different for every woman. It’s a phase of life that includes hormone fluctuations as a woman’s body transitions from her reproductive years to menopause. Perimenopause is not a synonym for suffering—although for some women, hormone imbalance can lead to experiences that are uncomfortable and impact her quality of life. An example would be irregular periods, heavier bleeding or lighter bleeding. It’s one of the most common experiences of perimenopause, yet one of most under-discussed. This leaves women unprepared and assuming something is seriously wrong if it happens as part of their perimenopause experience.
Stop saying normal. If we continue to tell women it’s “normal” to forget things, leak pee when they sneeze, be wide awake at 3 in the morning, lose her temper with her kids, bleed through a single pad every hour, or have low libido, we will continue to have women not listening to the signals their bodies are giving them. What we want to do is tell women that these experiences are common AND there are easy, viable solutions. We don’t want them thinking they have to “suck it up.” This time of our lives is an opportunity to invest in our health; not to put it on the back burner because “it’s just part of being a woman.” We want women to get informed, ask for help when they need it, surround themselves with experienced health professionals and choose the journey that is right for them. We are the first generation to turn 50 and have 50 more years to plan for. This is an incredible opportunity to invest in our health so we can reap the benefits of vitality and longevity into our 60s, 70s, 80s, 90s and beyond!
Stop using “hormones” and “hormone therapy” like they are swear words. And get really, really clear on the latest relevant information before you talk about hormones and hormone therapy. For a very long time, the words “hormones + teenagers” led to eye rolls, and that sentiment continues to stretch into women’s midlife health too. Stop it. Now. It also doesn’t help that for over 17 years, women have been making limited health decisions based on headlines telling them hormones cause cancer—headlines that were misleading and inaccurate, and born from the now infamous Women’s Health Initiative (WHI) study that was severely flawed. (By the way the headline announcing the study was flawed got buried.) We need to shift the paradigm to hormones are natural. Our bodies have been producing them for years and hormones serve hundreds of positive functions for our health. Hormone therapy is not a requirement for women navigating midlife, but it is a viable option worth investigating if she needs support managing uncomfortable experiences such as anxiety, depression, hot flashes, heavy bleeding or vaginal dryness. And the more we learn and the longer we live, hormone therapy is also regarded as an investment in our future brain health, bone health and heart health. Rather than something to ignore, it’s something for women to explore by working with their health care professional to conduct a risk assessment, and then if within 10 years of menopause and under 60, consider.
October 18th is World Menopause Day, a day to raise awareness and spark a larger conversation about support, research, and treatment in the area of menopausal health.
In honour of the day, we’re talking about MenopauseandU.ca! The site is run by the Society of Gynaecologists and Obstetricians of Canada (SOGC), to provide evidence-based information about menopause to the public.
According to MenopauseandU, “menopause is the point in time when a woman has had no menstrual period for 12 consecutive months.” But before menopause hits, women may notice that their body is already going through a lot of changes, due to fluctuating hormone levels. This period of time is called perimenopause.
The internet is full of (mis)information about women’s health, which is why websites like MenopauseandU are so important. When women have questions about what’s happening to their body, or what they should know about this period of their life, the SOGC sites are built to empower them with facts straight from the experts.
The website provides information about what menopause entails, signs and symptoms of menopause, options for therapies, and health concerns that may arise during this period. Further, the site provides an extensive list of resources for topics as they pertain to menopause, ranging from bladder health, to lifestyle, to sexuality, to mental health.
MenopauseandU is a truly valuable resource for women, and we invite you to start the conversation about menopause by sharing this resource with the women in your life. You can also join the conversation online using #WorldMenopauseDay on Twitter.
On October 9th, 2019 the BC Women’s Health Foundation, in partnership with Pacific Blue Cross, released the In Her Words report, exposing women’s experience with the healthcare system in BC.
The report is informed by a survey of 1000 BC women aged 16 and older, and was designed to assess women’s experience with accessing needed care, and their perceptions of interactions with healthcare providers. There was also an effort to understand the unique needs of Indigenous women.
The Women’s Health Research Institute (WHRI) played a role in the formation of the report, through informing the original survey questions, and contributing re-analysis of data, and data interpretation. Data collection was led by the Mustel group and Reciprocal Consulting.
The report illuminated differences in experiences among women, based on age, geographic location, or whether or not they were Indigenous. These intersections compound negative experiences within the BC healthcare system, with staggering numbers like 3 in 5 mature women reporting their symptoms were diminished or overlooked by a healthcare professional, or that 83% of Indigenous women aged 16-24 reported challenges accessing the medical care they needed.
“We’ve seen research that women see on average five to seven providers over three to five years before they receive an accurate diagnosis,” Dr. Lori Brotto, Executive Director of the WHRI , told the Vancouver Sun. “The report illustrated in a numeric form with a representative sample of B.C. women what we hear clinically: Women feel misunderstood, misdiagnosed, diagnosed too late, over-pathologized with certain conditions such as chronic pain.”
Throughout the report, real women share stories about their experiences within our healthcare system. Their messages are a powerful call-to-action for policy makers, healthcare providers, health researchers, funders, and other stakeholders to pay attention and believe women’s experiences, and to work toward closing the health gap.