Jessie Gruman, who sadly died July 14, 2014, was someone I greatly admired as a person and as a patient activist.I interviewed her in late April for research I was conducting on patient activism, and she graciously allowed me to publish the interview, wanting, not surprisingly for those who knew her, to do everything she could to use her experiences to help others.
Lisa: Why did you become a patient activist? Was there a specific incident or series of incidents?
Jessie: I worked on patient engagement for many years prior to speaking as a patient. My original impetus to work on these issues was probably receiving my first diagnosis of cancer at age 20 and being shocked at how non-compliant I was, even though my best chance of surviving depended on me behaving myself. How could this be?
I didn’t feel particularly pressed to speak from the perspective of a patient until my third cancer diagnosis in 2004, when I realized that the patient voice I was hearing in the media and around health care was unrealistic and tended to depend on war metaphors. Those patients who were speaking out with their “can-do” attitude based on limited experience with serious illness in no way represented my experience of having to work so hard to find the right care for me and to go through difficult surgeries and treatment regimens while feeling really bad and wondering if I was going to live.
I was astounded at how much of my care I had to organize and direct – more with each of my five cancer diagnoses. How do people who know less and have fewer resources manage this? It was this astonishment – and my realization that our ability to engage effectively in our care constitutes an equity problem for all of us – that motivates me.
Lisa: What were the steps you took?
Jessie: I started an organization with unrestricted support from the John D and Catherine T MacArthur Foundation to address these concerns. I have been successful in raising over $27m of mostly unrestricted money for this organization.
Lisa: Were there barriers such as stigma or privacy at specific points that you had to overcome?
Jessie: I have always believed in “in for a penny, in for a pound,” i.e., if I am going to speak as a patient, nothing patient-y is off the table.
I think many patient activists are by definition undervalued and their knowledge under-rated. I have spent my entire career working in and around health policy, health voluntary organizations, the NIH, AHRQ and the IOM. While not deep, my knowledge of the processes of medicine and health care and training and publishing, etc., is broader than many health experts and I am a good arguer and formidable patient representative. Just ask around.
Lisa: What have you done that has the greatest impact?
Jessie: To frame patient engagement as an equity issue.
Lisa: What are the mechanisms you use, such as speaking, writing, and social media, for communication and outreach?
Jessie: CFAH (my organization) has run the Health Behavior News Service since 1996. Working with the print, digital and broadcast media, we raise the visibility of new peer-reviewed research findings relevant to people making decisions about their health and health care. I did a lot of public speaking (20-35 speeches/ year) until my most recent diagnosis. I maintain a daily curated Twitter feed on the topics of equity, evidence and engagement and have an active presence on Facebook and LinkedIn.
Lisa: What are the primary sources of satisfaction you experience related to your activism?
Jessie: Knowing that I’m right.
Lisa: What are the primary difficulties or frustrations you experience related to your activism?
Jessie: Knowing that it doesn’t matter whether I’m right or not to the people who are shaping health care today. Patient concerns are – rhetoric to the contrary – simply a low priority for the delivery of health care except for those deluded souls who believe that health care will be cheaper if we patients are more engaged, i.e., the more risk that can be shifted to us, the more likely we are to refuse expensive care. This isn’t going to happen and is also frustrating: being engaged in one’s care doesn’t mean compliance with it.
Lisa: What do you think could help non-activists voice their innovations and experiences on health care issues relevant to themselves or to government agencies or health-related organizations including the “patient voice”?
Jessie: I think a post-visit questionnaire like I get from Open Table for every restaurant reservation would help people feel like they have an opportunity to contribute to change that matters to them.
The vast majority of us have no interest in changing “the system” or our hospital or even our clinic. We just want our doctor to call us back when we are worried about a rash from our new medication or get a prescription re-fill without having to go into the clinic again. Really – most people aren’t interested in being a patient voice. We want to get better and get back to our lives.
Lisa: What advice would you give to patients who are not currently activists?
Jessie: Find the right doctor or nurse practitioner to work with you. Negotiate a care plan that you can follow and if you can’t figure out how to check in with your clinician. Feel better.
Why should anyone aspire to become an activist? I would never encourage anyone to do so.
Lisa: What do you believe organizations could do to engage non-activists to provide feedback on and promote healthcare innovations?
Jessie: Who cares about healthcare innovations? Most of us are mostly healthy most of the time. Going to the doctor constitutes quite enough innovation, thank you. We don’t know what’s new and what’s old and it doesn’t concern us. We have other things to do, like work, play with our kids, go shopping, and fix the truck. We want experts—professionals—to use their expertise to help us get better. Expecting me to help health professionals to do their job more effectively unfairly presumes my interest, devalues my time and asks me to provide charity for them.
One of the biggest problems I have observed with those who are smitten with “the patient voice” is a tendency to want to rely on the least powerful and least educated involved in health care to solve their problems.
Lisa: How could organizations more effectively promote initiatives to patients?
Jessie: I don’t want an initiative. I want the right information and the right care and then I want to go home and not think about the doctor until I get sick again.
Lisa: What do you see as the ultimate measure of your impact in terms of the number of people you reach or the changes resulting from your work in people’s lives, in health policy, and in medical practice?
Jessie: There is no ultimate measure. My role is to represent a realistic view of what it is like to be a patient these days so that stakeholders who say they are interested in patient-centered care (or reforming care in the direction of serving patients generally) can respond to solid information / data rather than this odd collection of notions that all we need is a good pair of Jimmy Choo stilettos for our chemo treatment, and with our sense of social commitment intact, we’ll conquer even the most fearful, tedious, painful conditions, bend the cost curve and solve the problems that have eluded experts for all these years.
My role is not to find other stakeholders’ solutions. In a market economy, I am the customer.
My job as someone who wants people to be able to get better value from their health care is to describe what it now takes for me and my fellow patients to find good care and make the most of it: what barriers and limitations we face and what skills and resources seem to be required to overcome all those obstacles…and then ask / beg / beseech / make the case that the different stakeholders with their different domains of accountability and expertise address these deficits.
Father’s Day ads, cards, and store displays are everyplace. Now many retailers are pushing activity trackers as the perfect present, such as the Fitbit, the Nike+ Fuelband, and other device. They track number of steps taken per day and more. But, is there any stigma associated with gifting an activity tracker with the implication that the recipient is out of shape? Is there any difference in usage patterns between activity trackers purchased for oneself or given as gifts?
The Mobile Health Design class at Tufts University School of Medicine investigated the question: How do we market these gifts so they are meaningful, cherished, and used? They found three theory-based categories to help market fitness trackers for dads:
Emotional Appeal: Dads are especially sentimental around Father’s Day. There is an opportunity to show a father how valuable they are in their family’s life. Just like they kept their children safe and active while they were young, it is time for them to remain safe and active with a fitness tracker.
Social Support: Have bundled trackers so child and father can both participate together. People are much more likely to engage in a behavior if others around them are participating – especially when it is competitive, like between a father and child!
Instrumental Support: Purchase an activity tracker with equipment for an activity that the father enjoys – golf clubs, a new bowling ball, or new running shoes. It will reduce the barriers for engaging in activity and both tools will reinforce each other’s use.
Bradley Moore, MPH, co-course director for Mobile Health Design, culled these from the responses to the “challenge” we gave students in class. (Thanks, Bradley!)
My idea was to bundle activity trackers with Father’s Day cards: Remember when we used to _ (hike, go to the playground, …) Dad? Let’s go for a walk together!
Overall, activity trackers are like many products where the manufacturer’s goal is to sell as many as possible. What we like to think about is behavior change, how people will respond to the gift and what they might do with it the first time they use it – if they get to that point. One student told us about a Fitbit that was about to be regifted, collecting dust in the unopened package. That’s what our challenge – and the great ideas students had – hopes to avoid.
Everyone has a wonderful story but not everyone knows how to tell it: CancerForward survivor stories
Many health websites include stories, but some have richer sets of well-written stories than others. After seeing the stories in CancerForward™, I spoke to Beth Sanders Moore, the founder, to ask her why they include stories and how they solicit them.
Beth (left) is herself a thirteen-year breast cancer survivor, her mother is a thirty-two-year breast cancer survivor, and her grandfather was a cancer survivor. Through these experiences she has seen how the experience of being a cancer patient has changed, with people asking questions and evaluating treatment options now in a way they didn’t even thirteen years ago. Beth has also seen a change in what survivors want, and CancerForward was created to meet this need, with survivorship stories being one of the most important components, both for the people who read them and those who tell them. Beth sees many ways that people try to make a difference – volunteering, making donations, or telling their story – and all provide a way to give back or pay it forward.stories in CancerForward™, I spoke to Beth Sanders Moore, the founder, to ask her why they include stories and how they solicit them.
Since people are drawn to celebrities, the stories include those of high-profile survivors, like Cokie Roberts, but most of them are of people from all walks of life who have survived cancer. Having seen that the site includes a link to “Share Your Survivor Story”, I asked Beth about their process. When someone contacts them through this form, a writer works with them to help them tell their story. Beth said that some people submit stories that need little editing, while others need assistance because they don’t know how to express their experiences clearly or they become too caught up in emotions when recounting their story. Beth said that people process their experiences differently: some tell their stories soon after treatment, and some wait a long time into their survivorship. The completed stories are catalogued on CancerForward’s site by both cancer type and by practical, physical and emotional issues common to most survivors.
Interestingly, many stories shared with CancerForward are sent in the evening. Beth suspects that with fewer distractions of daily life, most people have more time for self-reflection at night and may also grow lonely and want to reach out by sharing their stories. She notes that far more people go on the CancerForward site and read stories than submit them. Some begin the “share” process and don’t finish it. The average time a site visitor stays on the site is about five minutes; some are less than a minute and some are for hours. If site visits are an indicator of popularity, the stories of high-profile women survivors are most popular, followed by the self-written stories submitted by women. That trend tracks with survivorship information consumption in general, says Beth. Historically, women discuss their experiences more openly and more often than men.
I asked Beth how many story inquiries they receive and she said 2-4 every month on their website. Many comments posted in connection with a story are essentially mini- stories. CancerForward maintains its Facebook page so that survivors and caregivers can make comments and/or post their stories there. I asked Beth if she thought people had stigma or privacy concerns about submitting stories, and she said that she thought it was a very individual decision to share a story although less likely in some cultures than others. She further thought that people feel good about sharing their story and receive support from others through the comments.
When asked if time and money were infinite what CancerForward would do differently, Beth immediately said they’d add more video stories, which people enjoy. Producing high quality videos is costly, which has prevented CancerForward from creating as many as they would like. Because of the uptick in smart phone video production, there is a project underway in 2014 to accommodate appropriate “selfie” videos and brief self-written stories on the CancerForward site. Because the amount of the site’s educational information and story lines has grown so rapidly, CancerForward is reworking its entire site to make navigating the site and locating content easier for visitors.
Beth and I discussed how every story has a message. Cokie Roberts’ message was that cancer was not going to stop her. While at one point CancerForward considered letting people create blogs on the site, they ultimately decided that blogs are too personal and detailed while the stories convey a clear message and are more hopeful. In our discussion we identified a taxonomy of health sites that incorporate stories. They range, at one extreme, from sites that request stories but have none displayed, to, at the other extreme, Weight Watcher’s success stories, which are very professionally done. CancerForward’s stories are near that end, because of their use of writers to work with people. Beth concluded, “Everyone has a wonderful story but not everyone knows how to tell it.”
I asked Beth if she has a favorite story on the site, a question for which she said there isn’t a simple answer. At one time or another, she’s read every story that’s been submitted whether it made it through the publication process or not. “They’re not all upbeat or hopeful, but they’re all real and to me, compelling. There are so many, many facets to cancer survivorship and contexts in which people fight cancer.” Beth admits that for inspiration, she’s drawn to the stories of adolescent and young adult survivors who’ve readjusted their sails, succeeded in forging a “new normal” in their lives, and are moving forward. And, she concedes there is a story that she thinks about often that speaks to resilience and facing reality. It’s the last conversation Beth had with her friend, Elizabeth Edwards about two months before Ms. Edwards died of breast cancer. Believing it important that survivors speak openly about palliative care and preparing for death, Ms. Edwards allowed Beth to publish their personal conversation as a story for CancerForward. It turned out to be the last “interview” Mrs. Edwards would give about her cancer and her life.
I presented 3 workshops on Social Media for Dentists at Yankee Dental Congress 2014 in Boston, where I met Joanna Stepka, who was at my workshop to learn more about how to use social media for her husband’s dental practice. Like most people in the workshop, she had a smartphone, but, unlike many people there, she was using it to tweet during the workshop. Impressed that she was live-tweeting during the workshop, I looked at the online presence of Stepka Family Dental after the workshop. Here is my 5 minute makeover.
Stepka Family Dental’s Facebook page had a “vanity url”, namely https://www.facebook.com/StepkaFamilyDental. Easy to do, but not all dental practices do it. The first time I looked the cover photo was bland but the new one (right), updated 2 days after the workshop, is great and I assumed was inspired by what I taught. The pictures are clearly not stock photos, which I recommended dental practices avoid because they are so bland, but ones of the staff.
Could this be improved? In the workshop I showed sites that use group shots instead of individual ones. The individual photos, however, are easier to update if there is turnover. I like seasonally appropriate imagery and these look like they were taken outside in the summer, not recently. Overall, they are great pictures and the staff look competent and approachable, which is what you want in a dental practice.
The branding for the practice is clear. The tagline is “Providing dental excellence to Rhode Island families since 1973. We specialize in treating your family like it’s our own.” It is a little long but welcoming and establishes credibility by showing that this is an established practice.
The Facebook page has 341 likes, which is much better than most of the dental practices with a Facebook presence that I showed during the workshop.I suspected that the practice must inform patients that they are on Facebook. (In fact, Joanna emailed me the new sign for the waiting room, which is included to the right.)
The Facebook posts are of an appropriate frequency – around 6 a month at a glance. They do not seem to be on a schedule, but rather are occasional updates about office activities, seasonal information, and some dental humor and education. Some of the posts have likes and comments, showing that people are engaging with the content.
The website and other social media
The blog leads to the website, which has more information on the practice, the staff, testimonials, and work in the community. The other forms of social media are depicted with icons, including Google+, Pinterest, and Twitter. The website highlights the recent Facebook posts, which is great for letting patients know not just that Facebook is used but what is posted, which is more enticing than an icon.
Of the other social media platforms, Twitter is the most heavily used after Facebook and, on the website the icon for Twitter should not be last since it is updated frequently. The profile on Twitter (right), “Providing dental excellence to Northern Rhode Island families since 1973,” a truncation of the Facebook tagline that maintains the consistent branding. The image is, I understand from Joanna, in the process of being updated. Currently there is text over text, which looks sloppy.
The tweets are great – like the Facebook posts, they are interesting, diverse, and quite human, which is very appropriate for a family dental practice. The frequency is a bit sporadic, but there are at least a few tweets every month, so anyone looking would never feel like it was an abandoned account (I had examples of those in my workshop) or one not worth following. There are fewer followers than on Facebook, so there are opportunities to inform patients about the account when they are waiting for or leaving an appointment or in any emails sent out. Also, some professional Twitter accounts will indicate who is tweeting, which Joanna might consider.
The other social media, besides Facebook and Twitter, seems more experimental, like Pinterest and the blog. While there is some overlap between what is posted on the different platforms, the messaging is never exactly replicated, which is good. And experimentation is good, not just from the perspective of what Joanna tries, but from that of seeing what reaches and appeals to their target audience. Certainly it would be better if the website and all social media used the same name, Stepka Dental or Stepka Family Dental, and the same banner imagery, but each type of social media has restrictions and limitations, making it hard to replicate branding.
While the posts and tweets were varied and interesting, more on the staff might be of interest. Even the fact that staff were at Yankee Dental Congress could be highlighted, since patients want their dentists and hygienists to be current in their knowledge. Other opportunities are to provide some additional educational materials targeting the needs of the different age groups they see, since it is a family practice, and to include more images of the staff. They should consider featuring some patients, with permission, in short videos or pictures, and even add pictures where possible to the testimonials. These images could replace the stock photos currently in use on the website. Given that the posts have personality, the images should too. Since they are involved in the community, more of that would give “human interest”. They could consider the use of a quarterly newsletter or eCards sent by email for patient birthdays or for holidays like Valentine’s Day with dental care messages.
Finally, in a search on “North Smithfield dentist” they came up high, so clearly what they are doing is resulting in good visibility in search results. Their steady use of multiple social media platforms can only help with visibility. I say this without knowing their goals, their other forms of promotion, or their metrics.
My overall impression is very positive. Without knowing the practice’s goals, but assuming that they are trying to attract new patients and to keep current patients engaged and educated, I think they are doing a great job. I heard from Joanna, who is shown here with her husband, Dr. Greg Stepka, “I was definitely inspired by your workshop and knew that I could ‘tidy up’ our social media fairly quickly. I plan on implementing e-newsletters and inviting patients to follow our social media as well. I started Pinterest & Google + after your workshop so those are in their infancy.” This ended up not being as much of a makeover but a commentary on what is clearly a work in progress.
Nerd chic? Geek chic? I even updated my twitter profile to show off my new Google Glass. My “winning tweet” was “#ifihadglass I’d provide context-sensitive, evidence-based exercise, diet, & adherence reminders & risk warnings to improve public health”. In retrospect, not bad for 137 characters! That was February 21. On March 28 @ProjectGlass tweeted, “@lisagualtieri You’re invited to join our #glassexplorers program. Woohoo! Make sure to follow us – we’ll DM in the coming weeks.” I was amazed how many people were excited for me, and asking to borrow them, including people who I never would have suspected would have heard of Google Glass. June 3 I received notification that “Your Glass is now ready!”
Less than 48 hours later, after the excitement of getting them and being trained to use them, my first reaction to them is that I’m not sure I want to wear glasses, or glass, or any device on a frame over my ears. I am pleased not to need glasses or contacts. Maybe it is my upbringing. At my aunt and uncle’s 50th wedding anniversary yesterday, I noticed that my mother’s eyes were closed in the 2 pictures of her in their wedding album. She didn’t wear her glasses when she was dressed up, and probably couldn’t see much without them. Are they my new fashion accessory?
My second reaction is that it is not yet apparent how Google Glass can improve my life and how I can fulfill the promise of my tweet. To improve my life, I’ve thought about teaching, research, meetings, exercise, and dancing, as a start, and see ways to capture and lifelog but not yet how to make substantial improvements. To improve public health, I asked myself, “What is possible if everyone had them?” and variations of “What if cancer patients had them?” I have glimmers of ideas but am still working on answers.
I love my smartphone. It provides immediate information I need to run my busy life. But, there is a downside to constant connectivity for me and for society: the death of reflection.
Being hyper-connected—and agitated when not—means losing those precious moments when disparate ideas merge, when pleasant memories bring joy, and when pondering a problem leads to innovation. Accessing and using too much information all the time stifles reflection and all of its benefits.
Fitness, I believe, offers the solution of listening to one’s body, which is the antithesis of the quantified-self movement in which everything is tracked. When I run, I can feel last night’s overindulgence at dinner or, equally, last night’s eight hours of sleep. But all the devices to track where I am, my pace, or the comparison to my “friends” or my last run, distract me from the reflective process that often leads to great work after my run.
It’s not just when I run. It is all those moments waiting for an elevator or standing in line when I check my email, see if anyone has mentioned me on Twitter, or make my next “Words with Friends” move.
Letting one’s mind wander and reflecting on both one’s internal thoughts and feelings and the external world leads to great ideas—and by that I don’t mean just new and better devices.
A version of this will appear in a report on “Disappearing Futures” in the September-October FUTURIST. Thanks to Cynthia G. Wagner, Editor of the FUTURIST, and to Analicia Villanueva and Mike Gualtieri for their feedback.
Why I Started
I started running 15 weeks ago because I decided to do the opposite of what I felt like doing. I was exhausted after teaching a 1-week course and, when resting didn’t help, I decided to run. I was already exercising, so, when I tried Couch25K, which my son recommended, I was beyond “couch”. But my previous attempts to run had been not serious (in college), had been at too fast a pace to sustain (a few years ago), or purely in my head (New Year’s resolutions). The latter seems to be common; when I told people I was running, many said, “I’ve been thinking of starting too.” It’s like when people view modern art and say, “I can do that.” But most don’t.
Using the language of Transtheoretical Model of Change, these people are at the precontemplation stage. I was too, until I started my “Do the Opposite” plan. The other stages are contemplation, preparation, action, and maintenance. I am solidly at the action stage.
What I Have Accomplished So Far
Even though I didn’t follow Couch25K, it made me aware of starting slow and building up. I knew the importance of a schedule thanks to my runner husband, Mike, and the exercise class I’ve been going to for years. I committed to running three times a week, and have only had one time I run twice (and a few I’ve run four times).
While my first run was six minutes, I have now completed a 5k. My longest run was 1:04:13, which included going up Nob Hill in San Francisco. I called this “breaking the one-hour barrier,” after reading about (the very different) “Breaking the Two-Hour Marathon Barrier.”
I have run in the rain, which seemed unappealing, but wasn’t bad after the first minute. I have run in heat and humidity – I started in August – and on crisp, fall days. I understand why runners say that fall is their favorite season.
Why I Persisted
It was great to see progress: I was able to go on longer runs and rarely felt tired at the end. It was really fun to run with Mike, who would run at my pace, not his own faster one. I especially liked running when we travelled – the aforementioned one at APHA in San Francisco and another in Montreal. Because I go to an exercise class, I generally don’t exercise when travelling, arguably when I need it most. Running is also a great way to see a city.
Sometimes I found running boring, although less so the longer I do it. I tried listening to music, and tried thinking about something specific (that was how I wrote this – in my head, while on a run).
I tried apps for running and didn’t like any of them. They took more effort to configure than seemed reasonable given that I just wanted to try them, and they asked for my height, weight, and age without telling me how the information would be used (apparently only to calculate how many calories I burned). Their tracking didn’t motivate me because I already had a sense of accomplishment at the end of each run. The reminders I still get from the apps would be unlikely to motivate me if I had started running and then stopped, as the apps believe. (I would like to think further how app design can incorporate Transtheoretical Model of Change in my Mobile Health Design course next summer.)
However I used Twitter and Facebook to informally track my runs, and loved the support and encouragement I received. It was fun to run into friends and colleagues who had not commented online but congratulated me on my running accomplishments. The funniest was when I saw a friend a few days after my 5k and she did a celebratory dance, singing my finish time. I have made new friends too, like Boston Globe writer and runner Elizabeth Comeau.
I am at the action, not the maintenance, stage; I feel committed to continuing but it feels a little tenuous. Mike surprised me once with new running clothes, and I also bought a long-sleeved running shirt in one of my favorite colors, thinking about Janet Wasserstein, who told me that she played better tennis in stylish tennis outfits. With the days getting colder, I need to avoid deterrents, and cold is definitely one of them.
I sometimes catalogue the benefits of running to keep myself from slipping out of the action stage. I like how running is a barometer of how I feel: what’s on my mind, did I get enough sleep? I enjoy being outside and moving, especially given how much I sit the rest of the day. My ”skinny jeans” fit the same, although I assume running has many health benefits for me. I am still working on how my insights can be incorporated into the design of my “Do the Opposite” app for new runners.
It seems like I’ll be at the maintenance stage when I actually look forward to running, not to being done. For right now, I like the sense of accomplishment.