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Community-based participatory research for mHealth to close the Digital Divide



#TelemedNow Twitter Chat Wednesday, September 30 – 8 PM ET Introduction & Welcome: Ritu Thamman (@iamritu)- Moderator Community-based participatory research for mHealth to close the Digital Divide Q1: How will adoption of mHealth improve care within low-income communities?

A1 Notable Responses: Jamey Edwards (@jameyedwards) #mHealth & #RPM brings care to underserved patients & increases access helping avoid taking time off work, or requiring childcare, taking bus or paying for parking. Also allows for monitoring of chronic conditions for communities disproportionally affected. Ceci Connolly (@CeciConnolly) For lots of people mobile device is #1 way they access internet. Can’t discount how important meeting people where they are is. If we’re going to build digital tools, they need to be on platforms people use. Ritu Thamman (@iamritu) Engagement in self-care can improve outcomes; self-care is influenced by spirituality, cultural beliefs, preferences Culturally sensitive interventions are needed To empower these pts who may have a historical mistrust of healthcare systems Janice Tufte (@Hassanah2017) Different modalities such as #RPM and #virtual care can offer opportunities conducive to low income patients. Talking to your doctor on the phone can save patients travel time, $$, worry and could be safer for their health. Andrew Watson (@arwmd) Access. Access and access. Also agree with @jameyedwards that #RPM will play a greater role moving forward. Question back at you - I do enough low income individuals have their own devices? This number is elusive. Do we have to create mobile hotspots? Beza Merid (@BezaMerid) This gets at an issue that concerns me. How do we design interventions that account for the possibility (likelihood?) that there are major barriers to access? And once we record these numbers, what can we do about it? Ceci Connolly (@CeciConnolly) These are the critical factors that green eyeshades scoring ROI and policy proposals never find a way to include in calculations. But this is how life works. Salim Saiyed (@SalimCMIO) a1 with targeted approach to low income communities (Phone emoji) close the care desert in those communities (White coat emoji) bring specialties to these communities improve overall health Helen Burstin (@HelenBurstin) Adoption mHealth should improve chronic illness and prevention. Many low-wage workers can’t get time off work so mHealth can allow access to data (test results), ask questions and share their own data without visit Matt Sakumoto (@MattSakumoto) mHealth is particularly effective for underserved communities. Many households have a mobile phone, even those that don't have laptop access. SMS-based interventions can have sig reach. Ami Bhatt (@AmiBhattMD) Agreed. Text based interventions have proven to be very helpful. Mobile applications for diabetes have created entire environments to help patients manage care. @Livongo Matt Sakumoto (@MattSakumoto) @Livongo and @omadahealth and @Tidepool_org have all created great engagement platforms for persons with diabetes #outcomesJC #telemednow Ami Bhatt (@AmiBhattMD) Pew Research shows: #Smartphone usage crosses #SES A great opportunity to help #telemedicine close the access gap Ritu Thamman (@iamritu) There is a report by the Pew Foundation : 53% of adults with annual incomes below $30 000 owned a smartphone Helen Burstin (@HelenBurstin) Really important point, @iamritu. The paper demonstrated much less trust in sharing data for Spanish-speaking patients. Need to better understand these issues, including lack of trust due to persistent racism for mHealth to have an impact Ceci Connolly (@CeciConnolly) For baseline health management...such as when @IH_News and @CDPHP partnering with companies such as @BrookHealth to give people the info they need to manage their health successfully Matt Sakumoto (@MattSakumoto) IL Public Health with Telehealth to expand Diabetic Retinopathy screening - great innovation and public partnership #telemednow #JCoutcomes https://iphionline.org/expanding-diabetic-tele-retinopathy-screening/ Cory Simpson (@CorySimpsonMD) Many underserved communities lack access to specialists. Using #TelemedNow can deliver much needed specialist-level care to patients regardless of where they reside. We’ve seen the benefits of using mHealth for #teledermatology to reach communities lacking #AccessToCare. Stevland Sonnier (@StevlandS) Care desert is such an excellent and powerful term. We've seen that echoed across a lot of measures (maternal and child health, prenatal or family planning come to mind). Really critical to note the possibilities of where these apps should directed first (deserts)

Q2 What are the barriers to wider adoption of mHealth tools in low income communities? A2 Notable Responses: Jamey Edwards (@JameyEdwards) #Broadband access, #smartphone penetration & other #SDoH drivers still present challenges for #DigitalHealth in underserved communities. Need to make sure #technology doesn't embed issues from existing analog process (bias, etc...) Helen Burstin (@HelenBurstin) mportant barriers (and solutions) to wider mHealth adoption in low income communities: some relate to access to technology (devices, broadband), but many more relate to sociocultural issues (trust, language, literacy, structural racism) Andrew Watson (@arwmd) Good question Ritu. One hidden barrier is the cost of cellular data plans. Is anyone else seeing this? We certainly are @UPMC Nino Isakadze (@NinoIsakadze) Not being comfortable with technology use Ceci Connolly (@CeciConnolly) Access to technology shouldn’t be underestimated as hurdle. Worth noting that 1/5 of adults in U.S. do not have a smart phone, according to @PewResearch. #TelemedNow https://pewresearch.org/internet/fact-sheet/mobile/… Ritu Thamman (@iamritu) Need digital connectivity/broadband https://bit.ly/3cL23mt Need visual #mHealth design that works & introduced carefully to adoption -barriers for women, older pts & whose first language isn’t English lowest income group https://bit.ly/36rpQqJ

Erica Spatz (@SpatzErica) Community health workers are so key to achieving health outcomes. But it's important that the CHW connect with the patient, not just their devices! Ritu Thamman (@iamritu) This is key- in your study “CHWs function in similar ways to a patient navigator—building trusting and supportive relationships and helping to advance health and well-being—but they are not integrated in the medical system to navigate care.” Rashmee Shah (@rashmeeushah) Is anyone concerned about data collection that goes with mHealth and digital health tools? It would generate a "profile" of vulnerable or high risk communities? Ami Bhatt (@AmiBhattMD) It’s a great question. We really do need to make sure that we protect our patients as we engage with an increasing number of companies gathering data. Ami Bhatt (@AmiBhattMD) We haven’t spoken about digital literacy. Despite the research @JameyEdwards as I are both excited to see, Owning a smartphone for social engagement and being able to manage healthcare on one, are two different skill sets. Kamala Tamirisa (@KTamirisaMD) Absolutely! Age gap along with literacy gap in adapting to technology Stevland Sonnier (@StevlandS) Cost/notification of eligibility come to mind. Similar to qualifying for subsidized broadband, if free/cheap mHealth tools exist, we should engage in outreach efforts to involve these communities. Also bring these folks to the table, ask them how we can help overcome barriers Beza Merid (@BezaMerid) Not having a network of family/friends who can troubleshoot devices if the patient has trouble Janice Tufte (@Hassanah2017) synchronous translators and or asynchronous translations are very limited as well unfortunately Matt Sakumoto (@MattSakumoto) Illuminating "quiz" and review on mHealth Apps, regulation and HIPAA from @UCSFCDHI Salim Saiyed (@SalimCMIO) 1. education & understanding of tools 2. access to broad band 3. access to #smartphones, #computers , etc 4. access to privacy to receive mHealth in safe place

Q3 What are community-based participatory research interventions & designs? A3 Notable Responses: Ceci Connolly (@CeciConnolly) Seriously we’re long past the time when we can pretend #socialneeds aren’t a major factor in a person’s health. It’s time we acknowledge it and make it a cornerstone of any and all approaches to care. Nino Isakadze (@NinoIsakadze) When designing mHealth (watch & cell phone emoji) tools or intervention strategies FOR DIVERSE patient groups we need to engage them in an inclusive problem solving process to create a solution that will work FOR DIVERSE group of patients John Ryan (@JJRyanMD) And I guess, what efforts are in place to overcome access to participating in these research interventions? Jamey Edwards (@JameyEdwards) Absolutely. Organizations like @partners_care do this & have built a non-profit #thinktank around addressing #SDoH. If we don't understand the problem, it makes it hard to craft the appropriate intervention. Understanding the stakeholders & incentives is key. Helen Burstin (@HelenBurstin) As I read through the study, I kept thinking about #CBPR v human-centered design for mHealth. Found interesting NCI blog on this question #TelemedNow #OutcomesJC https://cancercontrol.cancer.gov/is/blog/dispatches-from-is-at-nci-blog-september-2018 Ami Bhatt (@AmiBhattMD) If I can take a moment to highlight the next generation @MGHHeartHealth CVFellow @kemar_MD received an @ABCardio1 grant to study exactly this, earlier this week! Also watch @NjambiM_MD @RomitB_MD @kparuchuri @annievanb future #TelemedNow #SDOH leaders Matt Sakumoto (@MattSakumoto) Excellent examples of comm-engaged research from @JenBrownARCC @NammiKan and the @nu_ipham community at Northwestern #TelemedNow #outcomesJC Matt Sakumoto (@MattSakumoto) https://twitter.com/NammiKan/status/1310524050322710530?s=20… https://twitter.com/JenBrownARCC/status/1310763470770581504?s=20… #TelemedNow Stevland Sonnier (@StevlandS) We should note that providers & patients approach TH & mHealth w/ different focuses. Providers may look at function (can someone use this) while patients may focus on self-efficacy (can "I" use this) Must balance both perspectives Excellent study here: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7055744/ Helen Burstin (@HelenBurstin) Completely agree! Co-design and co-production of apps, portals, etc will go along way to acceptance and use by more diverse patient populations and improved outcomes! Sue Woods (@SueWoods) At @VeteransHealth there’s support for co-design of apps with VA patients #TelemedNow https://jopm.jmir.org/2020/3/e21214/ Q4 Should community-based participatory research interventions engage with SDOH when defining problems and designing interventions? A4 Notable Responses: Jamey Edwards (@JameyEdwards) Interventions can be clinical or just support general wellness & mental fitness. #Mentors, #lifecoaches, #dieticians, #navigators, case managers can all provide really useful services to tame #SDoH issues & be delivered via #Digital to underserved communities. Stevland Sonnier (@StevlandS) It is essential that we do this - we cannot effectively define a problem without understanding the root causes. We can come up with innovative solutions, but we need to know what we're up against. Do folks need a cheaper intervention if they cannot afford a smartphone, etc? Aditi Joshi (@draditijoshi) 100% otherwise we are only dealing with a sliver of a patient and community's health. the whole point of home based healthcare is to bridge that gap. can learn so much of what is available and can be leveraged! Ceci Connolly (@CeciConnolly) Mobile health tools boost efforts to address #socialneeds. On our 1st episode of #HealthyDialoguePodcast, @StephenParodiMD discussed how #TelemedNow lets him see/explore physical space of patients’ lives. A boon to IDing and addressing social factors. Ritu Thamman (@iamritu) feel this a rhetorical question: How can we not add #SDOH to best understand our patients? @AHAScience article adding this as a determinant of CVd #TelemedNow #OutcomesJC Janice Tufte (@Hassanah2017) As a #PatientPartner engaged in healthcare improvement, this seems like an obvious answer as #CBPR and #SDOH are integral and woven in place #WhereWeLive #ReceiveCare #GatherFood #SocialSupports #UtilizeTransportation #BroadbandAccess #telemednow Helen Burstin (@HelenBurstin) Is it truly #CBPR if #SDOH is NOT considered when designing problems/interventions? #CBPR has long history of focus on #SDOH, equity, and empowerment. Expect higher uptake #mHealth if built with the community barriers and needs in mind. #TelemedNow #OutcomesJC Andrew Watson (@arwmd) Not just CVd but healthcare a whole 100 (thumbs up emoji). #SDOH are more critical than we ever realized. #TelemedNow. Maybe as much as medication side effects or HAC? Be interested to study / compare this. Q5 How to intervene in the "economic & social contexts” that shape low income patients’ lives/health status using #mHealth? A5 Notable Responses: Jamey Edwards (@JameyEdwards) Absolutely. #mHealth & #RPM create an obscene amount of health data that requires #AI to filter through & create insights. But in turn, this #bigdata can be used by clinical teams for decision support & intervention guidance. Data driven #healthcare teams :) Ritu Thamman (@iamritu) ˄ Give Access( broadband) @AjitPaiFCC -vouchers for broadband ˄ Language/translation ˄ improve health literacy via coaches/ videos ˄ Clinics offering young ( high school) intergenerational support of tech teaching ( like the Apple bar) #TelemedNow #outcomesJC @arwmd Janice Tufte (@Hassanah2017) #AskThePatient what is their most important concern regarding their financial and or social needs #SimplyAsking = you care, next steps ~ go forward with empathy and compassion. #KnowLocalResources and the #ChallengesBarriers to receiving them #TelemedNow Erica Spatz (@EricaSpatz) We need to get better at telling stories with the data. Could we better use #realworlddata from the #EHR #RPM #SDOH community stats & psychological attributes to understand individuals' biology and biography? #TelemedNow #OutcomesJC Salim Saiyed (@SalimCMIO) the biggest impact is to bringing the tools, broadband, education to help with adoption #TelemedNow Matt Sakumoto (@MattSakumoto) SocHx should include more than just smoking status...#SDOH screening now avail in EHRs as SDOH wheel #telemednow #outcomesjc https://hopkinsmedicine.org/office-of-johns-hopkins-physicians/best-practice-news/a-new-way-to-document-social-determinants-of-health Stevland Sonnier (@StevlandS) Write your senators about these issues! They can take concerted actions (reform Lifeline, revise the E-Rate Act) that will improve their constituents' health. Also make the effort as a clinician to ask if they are facing any barriers to using mHealth apps. Matt Sakumoto (@MattSakumoto) FCC has increased mobile access in the past via "ObamaPhones" Can we leverage a similar program for mhealth access? #telemednow #outcomesjc #broadbandnow Sue Woods (@SueWoods) stop the paranoia and blocking use of SMS text to send and collect data. 95% use cell phones. HIPAA not the problem #culture #TelemedNow Helen Burstin (@HelenBurstin) Need to fix #digitaldivide (universal broadband) and ensure patients have what they need for #mHealth. Can we help low income patients buy #RPM devices (digital scale, BP cuff, glucometer & test strips)? Need level playing field to achieve #equity #TelemedNow #OutcomesJC Sue Woods (@SueWoods) stop the paranoia and blocking use of SMS text to send and collect data. 95% use cell phones. HIPAA not the problem #culture #TelemedNow Sue Woods (@SueWoods) In the UK they use simple text and customized protocols No devices no apps no password It works #telemednow

Q6 What is value of building a workforce infrastructure around #mHealth? A6 Notable Responses: Ritu Thamman (@Iamritu) point made by @BezaMeridin his editorial https://bit.ly/2Sf0rIo @CircOutcomes Once the study is done - who pays for the CHW? “CHWs rely on our research funding to remain in operation, we may be creating difficult disruptions in care when our studies end” #TelemedNow Janice Tufte (@Hassanah2017) #SupplyMeetsDemand mhealth is here to stay, many patients prefer to have #virtualcare when it is appropriate, as #telemedicine is an excellent supplement to standard quality in-person care #TelemedNow

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