1.  Research and Future Directions Digital Strategies for Health Communication Lisa Gualtieri, PhD, ScM Tufts University School of Medicine lisa.gualtieri@tufts.edu July 19, 2013

2. Research projects  Healthcare consumer mHealth, specifically…  Use of 2-way SMS to increase adherence in diabetes patients in India  Mobile health app design  Use of theoretical frameworks and evidence-based guidelines  Healthcare consumer use of online communities and social media, specifically…  Patient blogging

3. Agada Healthcare  Mohan Thanikachalam, MD, Managing Director, Agada Healthcare  Wanted to pilot mHealth at Agada Healthcare to  Increase compliance in diabetes patients  Reduce costs for appointment reminder calls  Also rural (mHealth Education Platform - Rural Non- Communicable Disease (NCD) Prevention Program, funded by Dimagi)  Some different issues because lower incomes etc.  mHealth in US ≠ mHealth globally  Sripriya Ravi, M.S.c, Mphil, MS, Head, Department Of Diabetes Education  Provided guidance, answered questions, conducted surveys

5. Starting point of research was questions  Technology  Cell phone penetration  Cell phone use and how it is changing  SMS (short message service) use and cost  Receptivity to SMS for health  One-way vs. two-way  MMS (multimedia message service)  Social media and email use  Smartphone use  Health  Diabetes demographics  In India  In Chennai  At Agada Healthcare  Attitudes toward diabetes  Compliance (or adherence)  Prevention  Role of the family  Everyone: diet, fitness, etc.  Some: smoking, alcohol, etc.

6. To date  2 surveys 1. They used one when planning Agada; we “cleaned” and analyzed – 195 responses 2. I created one to fill in gaps in my knowledge since no Pew or ComScore reports – 30 respondents  Sripriya on “typical” patients  Literature review and ALE  IRB letter  Seeking funding for study

7. Survey Analysis Methodology  Items in the survey were coded and analyzed with Microsoft Excel statistical tools  Aggregate findings are presented in the following slides  All data was provided de-identified

8.  2012 Survey Objectives: Collect baseline data on SMS usage amongst Agada patients Measure patient perceptions about SMS for health information Administered November and December 2012 to 30 respondents at Agada Healthcare

9. Access

10. Sending & receiving

11. Communicating with other patients

12. Topics of interest

13. Frequency of messaging

14. Family engagement

15. Typical adherent and non-adherent diabetes patients at Agada Healthcare Our questionsTypical adherentTypical non-adherent What are the typical patients like? The most adherent and involved patients are retired The least adherent are the busy middle managers and executives What is their health situationGood BG control - hba1c, might be overweight - but sense of well-being, confident about managing Poor BG control, foot infections, weight How are their self-management skills Regular clinic visits, diet control, regular exercise,- knowledge – ranges between medium to high awareness Irregular clinic visits, medication non adherence, excuses for exercise and poor diet control Is there family involvementUsually less dependent, family might be supportive Dependent on others, family or spouse usually their excuse for not being adherent What transpires during the course of their treatment General review of targets and reinforcement Explore different strategies – behavioral counseling, realistic goal setting, lifestyle suitable advice etc. How do they come to Agada Healthcare As routine visitsReferred by doctors, unmanageable symptoms, (typical diabetes related symptoms: foot complications, frequent infections, low sugar symptoms, burning of feet, pain) fear of complications

16. Literature Review – 1 Way SMS (Push) AuthorsRegionConditionPopulationStudy design InterventionResultsFindings/Implicati ons for Agada pilot design Bos, 2005 Appointment adherence 301 adultsRCTSMS appointment reminder sent 24 hours prior No significant difference Preferred reminder preferences in decreasing order: mail, phone SMS Chen, 2008 Appointment adherence 1848 adultsRCTPhone call or SMS reminder sent 72 hours prior to appointment Phone and SMS attendance rate the same and slightly higher than no reminder Cost of SMS less than cost of voice call Downer, 2006United States Appointment adherence 22,658 adultsRCTSMS reminder 72 hours prior to appointment Failure to attend rates lower, especially with existing patients Cost savings $12.20/appointment kept Franklin, 2006ScotlandDiabetes management 92 type 1 diabetics aged 8 - 18 RCT, 12 months duration Automated SMS, goal-specific and tailored to participant No significant change in adherence or HbA1c Aimed at improving self-efficacy Patrick, 2009United States Weight loss65 overweight adults RCT, 4 months duration Automated messages with behavioral strategies Intervention group lost more weight Participant could alter number and timing of messages. Used multimedia messages. 5-15 phone conversations with counselors

17. Literature Review – 2 Way SMS AuthorsRegionConditionPopulationStudy designInterventionResultsFindings/Implications for Agada pilot design Benhamou, 2007 FranceDiabetes management 31 type 1 adult diabetics with poor control Randomized crossover trial SMS with advice based on review of SMBG No significant improvement in HbA1c but significant improvement in quality of life Automated reporting of SMBG via PDA device Cho, 2009KoreaDiabetes management 75 type 2 diabetics RCT, 3 months duration SMS with medical advice based on SMBG. Glucose scores recorded via web tool HbA1c levels decreasedAs significant as same approached delivered through internet-based intervention Cocosila, 2009 CanadaVitamin adherence102 healthy adults RCT, 1 month duration Automated SMS reminder. Subsequent reminder/ correction msg. Request to reply after adherence Inconclusive – adherence increased but not statistically significant Informal language – jokes, smileys Haapala, 2009 FinlandWeight loss126 overweight adults RCT, 12 months duration Automated, targeted, weight-specific messages Intervention group lost more weight Participants chose target weight. Could initiate messages as desired Hanauer, 2009 United States Diabetes management 40 diabetic patients aged 12 – 25 RCT pilot, 3 months duration SMS reminders for monitoring blood glucose. SMBG sent via text SMS users requested more reminders than e-mail users, submitted more SMBG more quickly Website allowed user to set their own reminder schedule, view, see reported glucose levels. Most participants preferred phone access to e-mail/web Kim, 2008 Diabetes management 34 adult diabetic patients RCT, 6 months duration Weekly recommendations by nurse to adjust medication, insutlin based on patient’s SMBG Changes in HbA1c, LDL, and other health indicators Patients received reminder if they didn’t input information at least 1 time/week Kokher, 2009 IndiaBreast self-exam106 female adultsDuration 6 monthsUse SMS to remind women to perform BSE After 2 months of reminders, BSE rate improved significantly In person visit, with SMS follow-up to reinforce behavior Rami, 2006AustriaDiabetes management 36 type 1 diabetic adolescents Randomized crossover trial Medical advice based on SMBG, insulin, and dietary info sent by participant. Automated message when no changes needed HbA1c levels improvedParticipants often had technical difficulties and spent less than 1 minute sending SMS Yoon, 2008KoreaDiabetes management 60 type 2 diabetic adults, 12 months duration Quasi- experimental trial Participant sent SMBG, insulin, and medication information via computer or phone, nurse adjusted treatment based on reports HbA1C decreased significantly in intervention group Information from patient could be sent via internet on phone or computer. Participant decided frequency of reporting, but at least once/week. Reminder messages sent after 1 week of no activity

18. What have we learned?  Rather than talk about results, what have we learned about developing a study?

19. It is hard to find a set of text messages

20. And…  People do not share everything (like text messages)  Prevention is critical; is it unethical to not use an opportunity to reach family members?  If our IRB is different from their IRB, how is this reconciled?  When contacting the IRB, think about their perspective  The more technology is involved, the slower the cycles: from idea to funded research to published paper  Opportunities in other countries introduce new cultural issues

21. 3 research projects  Healthcare consumer mHealth, specifically…  Use of 2-way SMS to increase adherence in diabetes patients in India  Mobile health app design  Use of theoretical frameworks and evidence-based guidelines  Healthcare consumer use of online communities and social media, specifically…  Patient blogging

22. Research vs. personal experience  I became interested in the lack (or low) use of  Established theories  Evidence-based guidelines  to inform mobile health design

23. Then I started to run and use running apps  What is the role of personal insights?  What is their value?

24. 3 research projects  Healthcare consumer mHealth, specifically…  Use of 2-way SMS to increase adherence in diabetes patients in India  Mobile health app design  Use of theoretical frameworks and evidence-based guidelines  Healthcare consumer use of online communities and social media, specifically…  Patient blogging

25. 19 million people write blogs

26. People tell their experience of illness People have long communicated the experience of illness in writing public book private journalletters

27. Technology- enabled People tell their experience of illness Technology has enabled new ways to communicate the experience of illness in writing public book social media blogtwitter Facebook private journal journal on Care- Pages emailletters

28. Blogs are different  Online communities and social media  Short bursts, not continuous  Blogs allow author to create a micro-community  Open format unconstrained by  Length  Categories  Topic  Dated and tagged  Incorporating multimedia

29. Problem Statement  Lack of research on the phenomenon of patients with various chronic illness diagnoses writing blogs

30. How many patient bloggers?  13% of US e-patients write a blog about their diagnosis and treatment (Pew 2010)  e-patients refers to the 61% of US adults who use the Internet for health information  Of the 69% of US adults reported having Internet access, 7% reported blogging (HINTS 2007)  Fertile field with More than 133 million individuals living with chronic illness in the US  National Center for Health Statistics, 2006 The popularity of blogs and other social media Increased visibility on hospital and media websites  Assistive technologies make writing possible for individuals with disabilities and chronic illness

31. How many blogs?  24,000 health or health-related blogs  Largest number of patient blogs are about cancer  Women with or survivors of breast cancer are particularly active

32. Initial Interest  Gary Klatsky, Professor of Psychology at SUNY Oswego, who blogged about his cancer  His final post was January 10, 2009  Continued for short time by family to announce funeral and scholarship fund

33. Many patient bloggers  Most, like Gary’s, are written by individuals about their diagnosis and treatment  Not widely read  Not heavily commented  Hard to find: http://garysurgery.blogspot.com/http://garysurgery.blogspot.com/  A few are widely read and promoted

34. Leroy Sievers, NPR

35. Dana Jennings, New York Times

36. Mimi Rodriguez, Baptist Health South Florida

38. Some site support public or private blogs

39. Examples are Everyplace…

40. Preliminary study  Survey to people we knew and posted on Twitter  From 24 respondents we learned most start and maintain a blog to  Help others with the same diagnosis  Communicate with family and friends  Express feelings  Track the progression of the disease and treatment  Quotes  “As the months have passed, I have been making my posts philosophical as well as informational; expressing my thoughts as well as my condition. I find some comfort in doing that.”

41. Analysis of preliminary study indicated benefits Individual patients and caregivers Family and friends of patients Other people in similar situations Healthcare providers Medical community

42. Hypothesis Communicating the experience of illness through blogging provides positive psychosocial benefits to some patients with chronic illness.

43. Theoretical framework  Research is grounded in nursing theory  Dr. Margaret Newman’s theory Health as Expanding Consciousness recognizes that health is an awareness or consciousness of the evolving interaction between the individual and his or her environment and is possible regardless of presence or absence of disease.

44.  Literature search revealed a paucity of information on patient blogs  Initiated formative qualitative research to design an online survey  Developed an online consent to fully inform participants and meet Tufts Medical Center IRB regulations  IRB submitted and approved by Tufts Medical Center  A convenience sample of 41 current patient bloggers solicited through social media forums, online patient communities, and Boston Globe  Data analyzed for psychosocial themes as well as demographic data  Recognize that the cohort is a self-selected group of English speaking patient bloggers Project methods

46.  34 question online survey tool designed and tested through Survey Monkey™, a widely used survey aggregator/collector allowing for safe, SSL encrypted data transmission Survey questions consisted of a mix of closed-ended multiple choice and matrix design questions and open-ended essay/comment questions inquiring on motivational and psychosocial factors relating to blogging. Demographic data questions (age range, gender, educational level, race/ethnicity) are also asked Any question in the survey could be skipped by the respondent with the exception of Question 1 which served as the informed consent and was required to be answered in the affirmative Survey instrument

47. What is the diagnosis or illness that prompted you to begin a blog? Has writing a blog made a difference in how you have dealt with your illness? How? Has writing or reading patient blogs changed your sense of connection with others? Have you shared your blog with your health care provider? Sample questions

48.  High level of co-morbidities among the sample group: Isolating illness, such as chronic pain, fibromyalgia, depression Rare diseases or uncategorized illness Cancer, particularly breast and ovarian Diabetes Common features included chronicity of illness and potential for pain and suffering  Demographic data revealed: Relatively homogenous cohort Predominantly female Caucasian Highly educated 79% between ages of 25-55 Results

49. Public nature of blogs  Majority of blogs were searchable and public  Most bloggers used their own names when blogging versus a pen name or blogging anonymously  >80% shared their blogs with friends and family members  >95% read other people’s health/illness blogs  >80% have contributed comments on other people’s blogs  Majority of respondents engaged in other forms social media, in addition to blogging (most common were Facebook, Twitter)

55. Blogs shared with providers  Less than 1 in 4 respondents shared their blogs with their healthcare providers (HCP)  Reasons:  HCP wouldn’t be interested  HCP doesn’t have time  Want to vent  Concerned about judgments or repercussions to care  Blog is “my” reality

56. Some psychosocial themes identified  Increased connection with others  Decreased sense of isolation  Increased ability to tell one’s illness story to others  Increased accountability (to self and others)  Increased sense of efficacy  Increased sense of purpose, meaning and understanding of illness

57. Many ethical issues arise when studying blogs  What is invasive to blog authors?  What feels voyeuristic to you? Do you ever feel like a stalker?  Can you register, follow, “like”?  Can you comment?  Can you contact them?

58. Illness is replete with emotional experiences  Can you laugh? Can you cry? Can you count your blessings?  What do you say when someone is ill or dies?  Acknowledgments  We thank Gary Klatsky, PhD, as the source of inspiration behind the initial study that led to this research. Gary, who is now deceased, wrote a blog about his brain tumor and spoke to one of the authors (LG) about the reasons he started his blog.

59. More and more questions arise  Further investigation of positive emotional and physical health outcomes  Should blogging be recommended to newly diagnosed patients? Are there patients who, based on their disease or stage of disease, would benefit from blogging but would not think to? Are there differences based on type of illness, such as visible/hidden? Should healthcare providers recommend starting a blog and, if so, is there an optimal time? Development of educational tool to assist patients/providers in initiating a patient blog  Is there a better mechanism to help patients locate relevant blogs?  What can be learned about the experience of illness from analyzing patient blogs?

60. Being experienced in medical procedures, I have a uniform I wear to them now: velour sweat pants, matching velour zippered jacket (essentially Juicy Couture track suit knock-offs), a tank top, and a pull-up bra, like a Coobie. I top it off with slip-on Tom's shoes. Before I leave the house, I take off all my jewelry including wedding bands. With this outfit, whatever they want off me comes off easy, putting it back on is pain-free, and whatever I get to keep on is comfy and warm. Plus, I still look presentable to the public, like I actually got dressed. Hey, if Eva Longoria wore track suits out to the store on Desperate Housewives, I certainly can to a medical waiting room. And, if need be, (and need always be) I can go straight to bed in it. Talk about your duel-need clothing. Although it was 108 on the day I went for the procedure, I really needed the jacket that came with it.

61. Repository of Blogs  Create a repository of patient blogs in which patients can search for a specific type of blog or blogger  Define what makes good matches based on patient needs and measures of quality (to filter out blogs promoting products or erroneous information)  Search for, filter, and index blogs on an ongoing basis (since the content is not static)  Develop a specialized search engine that returns and ranks results

62. Learn from Blogs  Help cancer patients, clinicians, and researchers to learn from blogs  Textual summaries of individual blogs to patients or clinicians  Timelines of the course of a patient’s disease and treatment based on dated entries and content analysis  Answer questions about how cancer patients  react to diagnoses  develop coping strategies  experience and mitigate side effects of treatments  address the challenges of treatment adherence  other aspects of life as a cancer patient

63.  Are there successes that can be learned from?  Aggregation sites  News and travel repositories that aggregate blogs  Search tools  Dating sites  Technologies to “mine”  Increasingly used for social media  Sentiment analysis  Disease and disaster detection  Proof of concept Next steps

64. Many ethical issues arise when studying mHealth, online communities, and social media  What is invasive to them? What feels voyeuristic to you? Do you ever feel like a stalker?  Can you register, follow, fan, and friend?  Can you comment?  Can you join a twitter chat? In what role?  Use of Social Media for Injury Prevention in Farm Children

65. Illness is replete with emotional experiences  Can you laugh? Can you cry? Can you count your blessings?  What do you say when someone is ill or dies?  Communicating the Experience of Chronic Pain and Illness Through Blogging, J Med Internet Res 2012;14(5):e143  Acknowledgments: We thank Gary Klatsky, PhD, as the source of inspiration behind the initial study that led to this research. Gary, who is now deceased, wrote a blog about his brain tumor and spoke to one of the authors (LG) about the reasons he started his blog.

66. The Future of Digital Health Communication  People going online instead of going to a doctor  People using poor quality or deceptive information – the barriers have dropped  People misusing or misunderstanding information  People obsessively searching  People who are scared to death  People confronting their doctors or not telling their doctor about their “Dr. Google diagnosis” 66

67. “Don’t ask, don’t tell” culture  Doctors don’t ask and patients don’t tell  Yet patients are increasing relying on technology especially with social media and mobile  Are patients less likely to ask their doctor questions because they plan to look it up?  If so, is that “empowering” or dangerous? 67

68. Interventions can avoid “don’t ask, don’t tell” 68

69. Better health literacy skills Better training of healthcare professionals Better design 69

70. Better health literacy skills  How to search  What to look for – dates, authors, seals  How to communicate with a physician  What to believe and when and how to be skeptical 70

71. Better training of healthcare professionals  What and when to ask patients  What and when to recommend  Which to recommend  How to increase health literacy skills 71

72. Better design of health sites, social media, and apps  Test on real users with mixed health literacy skills in context  Conduct formative evaluations from the start  Have clear health goals and measure success at achieving them  Use better imagery  Clear branding and accreditation 72

73. Accreditation  Works when  Accreditation exists  Processes are transparent  Processes are not criticized  Healthcare consumers know to look  Happens in other domains  Is there a better way in healthcare? 73

74. Patients TechnologyPhysicians Intermediaries: Medical librarians, Pharmacists, Health coaches, Patient navigators, etc. More assistance through… 74

75. Intermediaries help patients  How to search and what to search for  How to detect the quality of expert-generated content  How to use user-generated content  When to contribute user-generated content  How to communicate with physicians about online activities 75

76. Intermediaries help physicians  What their patients are doing online  What resources their patients need  How to communicate with patients about online activities 76

77. Patients+ Technology+Physicians Intermediaries: Medical librarians, Pharmacists, Health coaches, Patient navigators, etc. Toward a better future for consumer healthcare 77