Why I Run: A Reflection at the “Action Stage”

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.

What’s Next

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.

Mobile Health Search

One of the most fascinating things about health apps is the process of selecting them: defining the need, determining how to search and which search terms to use, deciding which to consider, and deciding which to try. Having thought a lot about health app search, I was thrilled to have an opportunity to talk about the broader issue of mobile health search in a session at APHA12 on health information seeking.

My presentation first argued that it is almost impossible to focus only on laptops and desktops when considering health information seeking given the preponderance of mobile devices. I then talked about what mobile devices provide health seekers:

• Immediacy and access
• Affinity
• Multiple methods of input/output
• Context

As a taste of my talk, for affinity I said that the close, dare I say intimate, relationship many people have with their smartphones, has an impact on health searches. Affinity in combination with the greater privacy possible on a small screen are likely why people are more likely to search for information about sexually transmitted diseases and mental health. For context, I spoke about the role of the contextual information people see, hear, feel, and remember and how that impacts mobile health search; and how external information and data from sensors, such as weather, location, time of day, and blood pressure,  impact personalization and tailoring. I also challenged my audience to imagine if public health had the same resources as eCommerce for big data and predictive analytics. Instead of helping Target sell more products, timely and relevant information could help people live healthier lives.

My slides are posted here. Many thanks to Susannah Fox and John Mangano for sharing Pew and Comscore data respectively.

Intimate Partner Violence Screening: Why It Is Inconsistent and How It Can Be Improved

I was curious why Lahey Clinic, a nonprofit group practice outside of Boston, started asking patients, “Are you safe at home?” during intake. Trying to find this out turned into an exploration of the inconsistent state of intimate partner violence screening in the US.

 “Are You Safe At Home?”

The first time I was asked “Are you safe at home?” during patient intake at Lahey Clinic, I was surprised that such a personal question was asked in such an impersonal way – by a healthcare professional hunched over a laptop and not making eye contact with me (which inspired a blog post on the role of eye contact in physician-patient communication).  It seemed like the only purpose of the question was to check a box on an online form to show that they had screened for intimate partner violence (IPV), the au courant term for domestic abuse. When and why was “Are you safe at home?” added to Lahey’s patient intake process?

Finding the answer to my questions turned out to be surprisingly elusive:

• When was “Are you safe at home?” added to patient intake?
  • Is it used for all ages and genders?
  • Is the question included in the EMR?
  • Is it required by law or by accrediting agencies?
• Why was IPV screening added to patient intake?
  • Who asks the question and what training are they given about how to ask? Are they screening for IPV in other ways?
  • What wording and method of asking is most effective?
  • What protocols are in place if a patient answers in the negative or reacts with a response other than “Yes”?
  • Has data been collected on the answers and on the actions taken, or on the impact on detecting IPV?

I became interested in the answers, not just for Lahey, but for all hospitals and doctor’s practices.

IPV Screening May Be Required for Hospital Accreditation

I asked a nurse practitioner at Lahey Clinic, who said “Are you safe at home?” was added about two years ago and was asked of both men and women. She thought it was required as part of The Joint Commission’s (JCAHO) accreditation process and that when Lahey is up for review they need to show that all patients were asked. The nurse practitioner said that she did not know of a formal protocol if a patient said they were not safe at home and would have to decide on the spot to notify the police or social services. She further said that some patients get angry when asked because they see it as an invasion of privacy, and she speculated that these strong reactions might indicate a problem.

I learned more about JCAHO, which certifies hospitals and other medical facilities based on adherence to quality standards. Lahey was last accredited in November 2011, and the full report is available as are the accountability measures, which focus on patient safety initiatives, but not on IPV (that I could find). The results from the Survey of Patients’ Hospital Experiences were also available. (Since this was more recent than what was reported on Lahey’s site, I wondered if people actually check hospital survey results or for JCAHO accreditation. My curiosity led me to How to choose a hospital where JCAHO was listed as one of four other sources of information about hospitals to check besides Consumer Reports’ own ratings). Lahey’s commitment to IPV goes beyond the screening question, as indicated by their provision of Domestic Violence Resources as part of patient information and their Domestic Violence Initiative. Other Greater Boston hospital websites I looked at did not provide this information or it was more buried in their site.

Government Agencies Recommend IPV Prevention and Screening

JCAHO’s website led me to patient safety initiatives from The Agency for Healthcare Research and Quality (AHRQ) and to an Institute of Medicine (IOM) report, Clinical Preventive Services for Women: Closing the Gaps, that recommends to the US Department of Health and Human Services that women’s preventive services include screening and counseling for interpersonal and domestic violence in a culturally sensitive and supportive manner.

As early as 1992, the American Medical Association (AMA) issued non-binding guidelines that advised doctors to routinely question female patients about domestic violence and that they should consider the possibility of domestic abuse if patients provided “unlikely stories for how sustained an injury.” The guidelines addressed the actions a physician should take before the patient leaves the office. More recently, in November, 2007, AMA Policy E-2.02 Physicians’ Obligations in Preventing, Identifying, and Treating Violence and Abuse was adopted. It included the identification, treatment, and reporting of abuse and mentions the need to extend this to emotional abuse or neglect and to “patients who do not belong to population groups that are traditionally believed to be at risk of abuse”. Specifically, it said that:

Physicians should routinely inquire about physical, sexual, and psychological abuse as part of the medical history. Physicians should also consider abuse as a factor in the presentation of medical complaints because patients’ experiences with interpersonal violence or abuse may adversely affect their health status or ability to adhere to medical recommendations.

Another AMA report that referred to the 2007 guidelines stated that “Research results indicate, however, a high rate of missed opportunities for patient identification in clinical settings.”

About 25% of Woman Are Victims of IPV at Some Time

Amy LaVertu, MLS, an Information Services Librarian at the Hirsh Health Sciences Library at Tufts University, conducted searches to help me with my IPV research. (The use of multiple terms, including intimate partner violence, partner violence, domestic violence, and domestic abuse, made searching more difficult for both Amy and me.) Amy found out about the mandatory reporting laws that some states like California have that require health practitioners to report any known or suspected abuse but do not specify screening processes. Amy also found data about the incidence of IPV; US Preventative Services Task Force (USPSTF) reported, “It is hard to know exactly how many women experience IPV because it is not always reported. However, it is thought that between 1.3 and 5.3 million women experience IPV every year. About 25 percent of women experience IPV at some time during their lives.” This highlighted the extent of the problem as well as the need for consistent reporting, and made me yet again wonder what happens to the screening data from Lahey and other institutions.

IPV Screening Takes Many Forms

The recommendations about screening did not specify the wording or timing of screening. Through searches I located many patient intake forms that included the question “Are you safe at home” One was from Fenway Health in Boston, so I contacted Chris Viveiros, a former student, who is Fenway’s Associate Director of Communications. Chris found out from his colleagues that the online form “isn’t Fenway’s actual patient intake form. ‘The Fenway Guide to LGBT Health’ is a medical textbook that Fenway produced and published in conjunction with the American College of Physicians and the form was included in that textbook as a model form that others can adopt.” Chris checked with Fenway’s medical and behavioral health departments, and found that neither department includes that question on their patient intake form. Fenway’s Violence Recovery Program coordinator elaborated, “The Behavioral Health forms actually ask a series of questions about potential partner abuse developed from the screening tool the Violence Recovery Program uses to assess domestic violence.” Instead of “Are you safe at home?”, for over five years they have used a series of direct questions about what a person may be experiencing.

Another former student, Niranjan Karnik, MD, PhD, said that the recognition in the 1970s and 1980s of domestic violence as a public health issue is what led to the interest in screening. He guessed that each hospital creates their own intake forms, and pointed out that at University of Chicago Medicine, where he practices, “there are different intake forms for each clinic or department. In psychiatry we do not ask this question in this form; instead we tend to screen for childhood abuse as well as present abuse under the general rubric of past psychiatric history or social history.” Niranjan summarized my pursuit perfectly, saying “One over-arching issue to consider is how decentralized and fractured the US health care system is so that there is not one answer to these questions but many depending on individual institutional histories.”

Evidence That IPV Screening Works

Wanting to learn more about the accuracy, efficiency, and acceptability of screening processes, I read a systematic review update of the USPTF’s report on IVP screening in the Annals of Internal Medicine that states:

In conclusion, screening instruments designed for health care settings can accurately identify women experiencing IPV. Screening women for IPV could reduce IPV and improve health outcomes depending on the population screened and outcome measured, although effectiveness trials have important limitations. Screening has minimal adverse effects, but some women experience discomfort, loss of privacy, emotional distress, and concerns about further abuse.

Since I had initially been concerned about eye contact when screening, I was particularly interested in the comparison of delivery methods; the review stated that “higher rates of IPV disclosure resulting from self-administered methods than face-to-face questioning. Computerized screening increases rates of IPV discussion, disclosure, and service provision and is more acceptable for patients.” I wasn’t sure how these results fit with the findings in a JAMA article on the effect of computerized screening for partner violence on physical and mental health that concluded: “Among women receiving care in primary care clinics, providing a partner violence resource list with or without screening did not result in improved health.” Clearly more research needs to be done on screening effectiveness. I further wondered if any research on screening methods looked at the research reported in “The Media Equation: How People Treat Computers, Television, and New Media Like Real People and Places” by Byron Reeves and Clifford Nass, “The Man Who Lied to His Laptop: What Computers Can Teach Us About Human Relationships” by Clifford Nass, and other research on how people relate to technology.

What Helps People Who Are Being Abused?

When I spoke to Libby Bradshaw, DO, MS, my colleague in the Department of Public Health and Community Medicine at Tufts University School of Medicine, she focused on what most helps people who are being abused. As an ER physician, Libby used the Transtheoretical Model of Behavior Change (TTM) to assess which stage the person was at. (The five stages of change are precontemplation, contemplation, preparation, action, and maintenance.) At the precontemplation stage, she said, one can raise  awareness and help people identify themselves as victims. Libby would say to someone she suspected was a victim of abuse, “I’m concerned about your safety and anyone’s safety who has injuries like yours” to open a door to disclosure. Another colleague, Marcia M. Boumil, MS, JD, LL.M., agreed with Libby and talked about the value of deflection and repetition. Both Libby and Marcia said that it is important to be sensitive to sending someone home with literature and that a wallet card is often better than something larger.

Tara Montgomery, Director, Health Partnerships & Impact at Consumer Reports, sent me The Minnesota Center Against Violence and Abuse paper, Building Bridges between Domestic Violence Advocates and Health Care Providers, which promotes collaborations between domestic violence advocates and health care providers that answer questions including: “Will this program or policy make battered women safer?” and “Will this program or policy make all women safer?” (The paper, written in 1999, uses terminology, like “battered women”, that is rarely used today.)

IPV Prevention and Screening

We have moved beyond the notion of “battered women” to include both physical and emotional abuse and to acknowledge that this is a public health problem that crosses all boundaries and must be taken seriously because, as Libby pointed out, victims of abuse have been killed. Many organizations are focusing on prevention, notably Healthy People 2020, which includes, as developmental objectives, the reduction of physical violence, sexual violence, psychological abuse, and stalking by current or former intimate partners.

A component of prevention is increasing awareness, which, as I learned through my research, is being done through traditional approaches (posters, flyers on bathroom stalls, brochures, and wallet cards) and more recent ones (websites, social media such as CDC’s VetoViolence campaign on Facebook, app challenges such as Ending Violence @ Home, Teen Dating Violence Awareness Month, and Domestic Violence Awareness Month). Libby was on the board of directors of Jane Doe Inc., The Massachusetts Coalition Against Sexual Assault and Domestic Abuse. Their website has a “Leave this site quickly” tab, acknowledging that someone viewing the site might not be in a safe situation, and extensive information on how to find help. While some of the site is focused on women, they balance the need to be inclusive while being specific enough to provide helpful services.

I returned to Libby’s excellent point about what best helps victims of IPV reach and move past the precontemplative stage of TTM to the action stage. From what I learned from Niranjan about University of Chicago Medicine, from Chris about  Fenway Health, and from the nurse practitioner about Lahey Clinic, it seems that the use and wording of a screening question is based on, as Niranjan put it, “local practice and perceived needs”. Everything I learned leads me to believe that more standardized, evidence-based processes screening processes are needed. If screening instruments work, as the Annals of Internal Medicine review found, then what is the best wording to use to elicit a disclosure and the best delivery method (and does eye contact increase disclosure)?

Could more standardized screening processes lead to better reporting? The many constituents, including JCAHO, AMA, USPHS, CDC, hospitals, advocacy groups, and providers, differ in their goals and how they shape practice patterns. (I would like to make a flow chart showing where IPV decisions are made and the paths through which they reach institutions, health care providers, and patients.)

“We Do Not Have the Ability to Know Everything”

Niranjan said, “Invariably organizations are forced to make choices and what to ask and how much to dig because we do not have the ability to know everything. Who makes these choices about what is on a form is often less clear, and that opacity is what you found along your journey. A clerk may be tasked with creating a form, or a committee of physicians and nurses. There is little in the way of standard of practice for the development of medical infrastructure (I use this term in the broadest sense to include forms, apps, programs, charts, physical space and technology), and yet there is so much of the outcome that infrastructure determines.”

Healthcare professionals have a unique opportunity to identify IPV early to break the cycle of physical, psychological, and sexual violence. Requiring IPV screening in all states and all hospitals and doctor’s practices is a huge step in the right direction. But, in the spirit of evidence-based medicine, more research must be done to determine the specific IPV screening procedures and protocols that are most effective in detecting IPV and helping victims of abuse.

How the FDA Approves Drugs: My Role on the Arthritis Advisory Committee

Behind the headlines “FDA Panel Unanimously Rejects…” and “Arthritis Pill From Pfizer Wins Support…” was, for me, over 600 pages of reading and two days at the FDA as the Consumer Representative to the Arthritis Advisory Committee (AAC). These were my first meetings following an almost yearlong process that started with a nomination by Diane Aronson, the Consumer Representative whose term was ending, and culminated with my four year committee appointment. The FDA has many advisory committees consisting of outside experts who provide the FDA with independent opinions and recommendations on applications to market new drugs.  As Consumer Representative, my role is to represent the consumer perspective on issues and actions before the FDA AAC.

The first meeting was to review Regeneron Pharmaceuticals’ Arcalyst, also known by its generic name rilonacept, for short-term use to treat gout, a form of arthritis. It was already on the market to treat a rare disease, Cryopyrin-Associated Periodic Syndromes. The second meeting was for Pfizer’s tofacitinib, which was under review for treatment of rheumatoid arthritis. Tofacitinib had quite a bit of press preceding this meeting, mostly focusing on it being a “potential blockbuster, with peak sales of $2 billion to $3 billion a year, if its benefits are deemed to outweigh the risks”.

The most grueling part of preparing for the meetings was reading the materials including clinical trial results from the pharmaceutical companies, who are called the sponsor, and from the FDA, who is called the agency. As I read, I focused on understanding the efficacy and safety of the drugs, and their impact on quality of life. I had many questions, some of which were answered in the documents, and some that I made note of to ask during the meetings.

Regenron’s rilonacept for gout

The May 8 meeting took place at the FDA White Oak Campus, where we had to go through security before going to the meeting room, which was largely empty. The front was roped off for the committee, who sat at a U-shaped table where name tents and folders were waiting for us. The sponsor, Regenron, had rows of chairs on one side, and the agency did on the other side. On the agency side there were people in military uniform, but I never found out who they were. When the meeting started, the process was very formal, with parallels to court although, carrying that analogy further, it wasn’t clear whether we were the judges, the jury, or both.

The meeting was presided over by Lenore M. Buckley, MD, MPH, the committee chair, and Philip Bautista, PharmD, the FDA’s Designated Federal Officer to the AAC. They started by summarizing the meeting agenda and instructing everyone on the protocols for speaking. Each committee member had a microphone with a talk button and yes-no-abstain voting buttons. It was an open meeting, with the public and press sparsely represented, and a live webcast.

The morning consisted of the sponsor’s presentation, followed by the agency’s presentation, each with time at the end for our questions. I was struck by how the sponsor had prepared slides for every anticipated question, all pre-loaded so readily available. I wondered about all the slides we weren’t seeing, and the questions we should be asking but hadn’t. The sponsor also brought experts, who all started by stating their financial involvement with the sponsor and if they benefit from the outcome of the meeting. I was struck by some of the differences between the language used and points made by the sponsor and the agency, including the sponsor’s use of “benefit risk profile” and the agency’s use of “risk benefit profile”.

Following lunch, any member of the public who registered in advance could make a statement. We had some letters in our packets from patients, patient advocates, and physicians that related to rilonacept or, in one case, to men’s health issues, since gout primarily affects men.

Once all sides had been heard, the agency posed their questions to the committee, some for discussion and some for vote. We had further opportunities to ask questions and many of them pertained to the risks. Once votes were captured for each of the three votes, the tally of the votes was displayed and then a table of how individuals voted. The chair asked every panelist to state their name, how they voted, and the reason. The stated reasons seemed to be the primary sound bites captured by the press, especially for the final vote, if the efficacy and safety data supported approval of rilonacept. The committee voted unanimously against approval; I later learned that unanimous votes are rare.

Pfizer’s tofacitinib for rheumatoid arthritis

The second meeting, on May 9, was very different from the first, starting with longer security lines when we arrived in the morning. It was an open meeting with a live webcast again, but this time the auditorium was packed, with a row of press and more patients and patient advocates, including one who I knew from Twitter, Kelly Young. There was a large contingent from Pfizer. One my fellow panelists had told me to expect far more people than the prior day because our vote has much greater financial impact, since this was potentially a blockbuster drug with projected sales of $2 billion to $3 billion a year.

The agenda was similar to the previous meeting. Pfizer presented and, like Regeneron, brought outside experts. Pfizer had many slides in addition to those used in their presentation to answer our questions. Clearly a lot of effort went into anticipating our questions, preparing slides, and indexing them to be able to locate them quickly in response to a question.

I was more confident asking questions than I had been at the first meeting because I better understood the process. I asked Pfizer to elaborate on the safety profile of the longer term clinical trial data regarding the two dosing options, 5 mg and 10 mg, evaluated in the clinical trials. I also asked them if they had plans for patient education and they showed a slide about Dear Doctor and Pharmacist letters which did not answer my question. There was some additional discussion about the efficacy and safety of smaller doses.

The final vote was 8-2 in favor.  Many who voted yes urged further research about some of its side effects, concerns that largely didn’t make the headlines. The New York Times accurately reported that we “urged the Food and Drug Administration to require rigorous follow-up studies.” Like the previous meeting, the final vote was only a recommendation to the FDA; as stated in the New York Times, “the agency, which is scheduled to decide on approval by August, usually — but not always — follows the advice of advisory committees.”

A public process for patient safety

The meetings were fascinating and I appreciated the public nature of the process, including making all materials available to the public before the meeting, opening it to the public in person and through streaming, and providing time for people like Jan Wyatt, RN, PhD to speak. I saw the meetings as a milestone in a long chain of events that started with years of research and clinical trials. The meetings were not the end since the FDA needs to make decisions based on the AAC recommendations and then work with the sponsors on their next steps to further ensure efficacy and safety.

I am honored to be part of this committee. Most of all, I have the deepest respect for the professionalism and knowledge of my fellow committee members, the agency, the sponsors, and the public who participated. Together I believe we have the shared goals of bringing new treatments to patients without compromising safety.

Must Waiting Be Inherent To Medical Care?

“By the time you see the doctor, you’re either dead or you’re better,” my mother-in-law told me. She had to have multiple tests, all with long waits to get the appointments and the results, before her health insurer would allow her to make an appointment with a specialist.

“Waiting is the bane of the medical system,” a former student, an R.N., concurred. Advances in medicine and technology have improved medical outcomes, but have often resulted in more waiting at a time when every other aspect of life is speeding up. Waiting is a systemic problem exacerbated by advances in medicine and by health care reform.

Some of the ways we wait:

1. Wait to see if the symptoms go away or get worse. We all struggle with these decisions: do we need to be seen about the fever, back pain, or rash? Sometimes we wait because of denial or hopelessness; sometimes because of the cost or availability of medical care. I make decisions about when I need to see the doctor by asking myself if, under the same circumstances, I would take one of my children to the doctor.
2. Wait to get an appointment scheduled. I’ve made appointments for a sick child by channeling an old friend who could be relentless: “That is not acceptable. I need an appointment today.” Obnoxious but it sometimes worked. The rest of the time, though, the period between making and having an appointment can feel very long.
3. Wait to get to the appointment. Doctors and hospitals are more abundant in Greater Boston, where I live, than in other places, although traffic and parking can be problematic. Melody Smith Jones described a man’s six hour commute to see a doctor.
4. Wait to be seen by the doctor. It isn’t called the waiting room for nothing. Dr. Atul Gawande wrote in The Checklist Manifesto about people in the waiting room getting irate when he was running two hours behind on a hectic day. Being irate – or anxious or bored – is unlikely to increase the quality of physician-patient communication.
5. Wait in the examining room. At least in a waiting room you are dressed. If it is cold and you are wearing a paper or cloth johnny, distractions don’t work as well and examining rooms have fewer than waiting rooms.
6. See the doctor. Nowadays, as my mother-in-law recounted, you have to wait for the doctor to review your records before even looking at you. I find it surprising that physician rating systems give equal weight to wait times as they do to “communicates” and “listens”, when the latter are so much more important.
7. Wait in the lab. The selection of magazines is skimpier. You may be reviewing what you were told not to eat or drink: will that cup of black coffee skew the results?
8. Wait for lab results. If there are any non-routine reasons for testing, this can be interminable. I leave a lab asking when results will be ready and then I call. A former student told me about using Harvard Vanguard’s MyHealth Online. She said, “I love getting the lab results immediately online but I can see how those without clinical training could be overwhelmed or confused by the data and how to interpret them.”
9. Wait for the doctor’s interpretation of lab results. Lab results can be hard to decipher without clinical training, as my student said above. Even when I know results are available and the doctor has seen them, it can take many phone calls to obtain the doctor’s message via the secretary. Asking the doctor follow-up questions takes even longer. These are waits with a cell phone never turned off so you don’t miss the call.
10. Loop. You think you’re done but you may need to see a specialist, get a second opinion, or have more tests. As my mother-in-law pointed out, this process can be controlled more by insurance companies than by doctors’ availability. Another type of waiting also takes place now: waiting to get better. A friend bemoaned how she “couldn’t wait” for her black eye resulting from a fall to clear up because she was tired of people staring at her.

Waiting Reduction

We all have to wait. Waiting is an inherent part of being ill. But here are some ways to reduce wait time or lessen the impact:

1. Schedule tests and doctor’s appointments together. My exercise teacher told me about her husband’s hospital visit that started with a CT scan and ended with a doctor’s appointment to discuss the results. With no problems detected and a year until they next visit, they both said what a relief it was to get it over with quickly. Scheduling appointments together reduced both waiting time and anxiety, although not all tests results can be interpreted this quickly. Personally I find it is much easier to deal with a diagnosis than fear of what a symptom could mean.
2. Avoid unnecessary appointments through email or phone. A Dutch friend, whose sister and aunt are doctors, recounted instances when she was able to get quick answers by email or phone to questions, be reassured, and save a lot of time and effort. One instance: “Once I was on holiday in Greece and sent my sister a picture when my eye was infected. She told me to buy drops and that it would go away.” Since most people do not have convenient relatives with medical degrees to talk to, being able to easily reach a doctor or nurse by email could provide a way to get a quick answer. Dr. Danny Sands has long been a proponent of physician-patient email, but most practices do not support it. I can easily see the benefits because email forces you to describe a situation concisely and images can be attached as appropriate.
3. Meet Dr. Skype. Melody Smith Jones posed the question, “Can telehealth be used to end this man’s 6 hour commute by providing him access to the specialists he requires? What barriers and challenges still lay before us to make this a reality?” Dr. Joseph Kvedar answers this, saying “We have to move beyond the antiquated notion that you must visit a physical space and talk real-time with your health care provider to fulfill the process of care.  Seamless communication between you the patient and the system (including your provider but also your health information) will allow us to cut through what is a falsely complex and inefficient system to achieve more efficiency, less waiting and less anxiety.”
4. Ask the expert. Self-proclaimed experts and community-verified experts provide advice in many sites like Yahoo! Answers. Recently there has been a proliferation of sites supporting health Q&A. A new entry, HealthTap, promotes that it has “Answers from 5,000 U.S. licensed physicians. No waiting room.” I tried it and questioned why I needed to answer so many personal questions during the registration process. Once registered, I started to ask a question but was stumped by how much context to provide. In general one of the things I like about Ask the Expert is the ability to browse other people’s questions – sometimes you learn more from questions you never would have thought to ask – and answers.
5. Use clinics for non-urgent care. I had a friend who believed that it was important to see the same doctor because he or she could notice changes that might not otherwise be detected. While I agree, the Minute Clinic (note the name) model can potentially reduce some of the use of doctors for non-urgent care.
6. Enhance health literacy skills. With 80% of US internet users looking online for health information, better health literacy skills are needed to guide the strategies used to seek, select, and use online health information. This is rarely taught in schools or by doctors, and is increasingly necessary because of the lower barriers with social media: it is easier than ever to promote herbal supplements and bad advice.
7. Make waiting fun – or at least less stressful. Deirdre Walsh, a health coach and a former student, said, “The pain and frustration of endless waiting seems needlessly cruel. But it’s often the emotional toll of fear and uncertainty that does the most damage from the negative effects of stress chemicals on energy, sleep and mood.  If waiting is inevitable, there are self-awareness exercises that restore calm, power, and the sense of control. ” Games and gamification have potential as well: a version of “Wait, wait… don’t tell me!” for the waiting room?
8. Is there an app for that? Not that I know of, but social media is being used by public health departments to post flu clinic waits and by emergency rooms to post wait times. What about for doctor’s visits? Dr. Richard Besser said, “You shouldn’t have to wait more than 15 minutes unless there’s an emergency.  Social media might be a great place for people to share waiting times.” Along those lines, I read about, but have not tried, WaitChecker, a web-based service to alert patients to appointment delays.
9. Set expectations. The metaphor Trisha Torrey uses is “when you arrive at a busy restaurant on a Friday night, what’s your question to the host?  How long is the wait?  It’s only fair that providers manage our expectations about wait times, too.” It is easier to be patient with expectations set, not just for the length of a wait but the course of a disease.
10. Use waiting time on task. A student once told me that she had a rash when pregnant and assumed it was unrelated to her pregnancy. She searched for information on her iPhone while in the waiting room, decided it might be related after all, and asked her doctor, who treated it. She saved another doctor’s appointment. What if all waiting rooms provided mobile devices? Or promoted prevention with education, exercises, and healthy snacks. Talk about captive audiences.

Quality of Health Care Is Paramount

It is important to maintain perspective: quality of health care is paramount. Everyone wants the best care possible and sometimes waiting is unavoidable. With no health advantages to waiting, put , as Dr. Ted Eytan said, “the patients’ cost of care, which includes the time they spend waiting, into the equation. Everything follows from that.” There is no reason to accept that it’s part of our health system, but, instead to work to reduce waiting, and to reduce the impact of waiting.

Avoiding Fraudulent Health Websites Through Reviews

Given the difficulty healthcare consumers have in locating useful and reliable health information, I took note of SiteJabber.com both because of their model of website reviews and because they are supported by a grant from the National Science Foundation. I interviewed Jeremy Gin, their CEO and co-founder, who calls SiteJabber a consumer protection service that helps people avoid fraudulent websites, find good sites, and contribute reviews. The site has information on over 100,000 websites, including 6403 health sites, and is visited by over 400,000 consumers every month. They were named one of the top 100 websites of 2010 by PC Magazine.

Lisa: Health website quality is arguably more important than any other type of site. How does SiteJabber address quality issues?

Jeremy: We certainly share your concern about the quality of information available to consumers on the quality of healthcare sites. Our role is publishing community reviews on the quality of healthcare sites, and our own data gathering and surfacing of useful information that might not be easily available to consumers. In terms of the quality of information on SiteJabber, we go through great efforts to limit the impact of spam on our site through technology, administrative review curation, and community review curation. 

Lisa: Do you ever ask people to review sites or have people on staff doing reviews? Many health sites seemed to be reviewed by one person, Rod G.

Jeremy: Most of our reviews come from Online Consumer Advocates. These Advocates are typically possess a wide-range of expertise—think modern-day Renaissance men and women—and care deeply about helping other consumers and making the internet a better place for everyone. We are very thankful and lucky to have a number of these individuals who have dedicated a large amount of their time to supporting our cause. While we do not pay reviewers, Rod G. is one of our co-founders and an MD, so has written a number of reviews of health sites. In the coming months, we will be inviting more healthcare experts (MDs as well as others) to review sites. Right now we have a “reviewer level” system which lets readers know the relative trustworthiness of reviewers. We’re also about to introduce a more robust system which will incorporate authority specific to healthcare. 

Lisa: Why do you show the HONcode logo for some sites? I ask this because so many healthcare consumers don’t know what it is. Do you think it adds credibility?

Jeremy: In the health field, we believe HON Seals provide useful information. For those who haven’t heard of it, it is a non-profit based in Switzerland which vets healthcare sites for information quality, conflicts of interest, etc. However, I would point out that HON Seal information is offered only as a data point to consumers, not the ultimate judge of a website’s quality. For example, sites such as Psychcentral and Dailystrength are HON certified but our reviewers have brought up legitimate issues with these sites that we believe consumers should be aware of as well.

Lisa: Do you like controversy in reviews, such as those on Quackwatch, which is one of the few health sites I found with multiple reviews?

Jeremy: Controversy is not something we seek out—our chief concern is providing transparency and useful information for consumers—but sometimes controversy finds us, in which case we do our best to keep the discussions focused on giving people something useful to read.

Lisa: How does social media fit into your model? I see you use Twitter and Facebook, and have a blog as well.

Jeremy: Social media has been important to us in the past and will be increasingly important going forward. We use our blog to communicate broadly with our community and the general public; so if we notice an emerging scam we can let everyone know, or if we come up with some tips for consumers in a particular subject (like health), we can post those as well. We also publish illustrative graphics on topics we believe are important to consumers, such as the counterfeit pharmaceuticals trade. Blog posts are broadcast through our Facebook Fan Page and Twitter account and often syndicated by The Atlantic, Fast Company, and AOL’s Consumer Ally so they can reach more than our usual base of visitors. In addition, our reviewers can use their own Facebook and Twitter accounts to broadcast their own reviews. We’re presently working on a deeper integration of social media so our reviewers can make their SiteJabber experience an extension of their Facebook experience, if they so choose.

Social Media Metrics for Healthcare

Metrics show which approaches are successful and justify the expenditure. Social media metrics are tricky because obvious ones, such as numbers of fans and followers, may not be the measures indicating success at achieving goals.

Jennifer Schmidt, in Social Media and Health, did a class project on Social Media Metrics for Healthcare in which she identified the four most effective metrics to measure, brand mentions/sentiment; activity ratio; engagement duration; and loyalty. Learn what these are and how to measure them in her paper, Social Media Metrics for HealthCare and slides, which close with the apt and powerful message: 

Develop a message, create an audience, analyze, adjust, and engage.