Facebook Is Revolutionizing The Search For An Organ Donor, But Is It Fair?

This week The New Yorker ran a fascinating article called, "To Donate Your Kidney, Click Here".  More and more people are turning to Facebook to try and find living organ donors.  And while many have found tremendous success using this strategy, the article highlights the serious ethical concerns that now face the medical and public health communities in light of this trend.

Concerns About Disparities

The Advocates

While data show that Facebook is the most popular social networking site among online adults, we do not know how social media advocacy skills translate across demographic variables.  In The New Yorker article, Dr. Dan O'Connor of Johns Hopkins University asks "“Whenever you’re using platforms like Facebook, the question is, what kind of person, what demographic profile has the time and energy and communication skills to make this work?” [bolding added]

The Donors

Dr. Michael Shapiro (who chooses not to perform kidney transplants on donor-recipient pairs who met through online advertising) said, “It’s not hard to imagine that if you’re attractive and young and appealing, it’s easier to get people to donate to you than if you’re short or ugly or have a hunchback. And that’s not the way we want the system to work." [bolding added]

While there is limited research regarding Facebook donor-recipient matching, research out of Loyola University offers support for Dr. Shapiro's concerns.  After examining Facebook pages seeking kidney donation, the researchers found that certain types of pages (i.e., white patients and those with more posts) were more likely to have people come forward and get tested to be a possible donor.

Leveling The Playing Field

As with any health or access disparity, public health needs to innovate solutions to narrow the gap.  The New Yorker article discussed Dr. Andrew Cameron (a transplant surgeon at Johns Hopkins) who is working on one possible solution.  He is developing a smartphone application which may level the playing field for patients/families for which social media tools and advocacy resources are less intuitive or accessible.  The app would offer a “template” for those in need of organs to tell their story, and would provide a system for those users to connect directly with transplant centers and social media resources.

What Do You Think?

• Does donor matching on Facebook provide an advantage to certain demographic groups?
• What can we do to level the playing field for those patients/families with (1) limited access to social media tools or advocacy skills? (2) stories that may be "less attractive" to the public?
• Are you surprised that some surgeons (e.g., Dr. Michael Shapiro profiled in The New Yorker) choose not to operate on pairs who meet through online advertising?

Bonus Read: This is not the first time that Facebook has been part of the organ donation dialogue.  Last May I wrote about Facebook's "share life" tool, which allows users to share their organ donation status on their timeline.  Since then, research has shown that the tool is effective in increasing donor numbers.

Candid Nurse EHR Opinions at Facebook Page "Friend a Nurse" Are Not So Friendly

At my Jan. 2010 post "An Honest Physician Survey on EHR's" (http://hcrenewal.blogspot.com/2010/01/honest-physician-survey-on-ehrs.html) I wrote:

I often believe surveys of physicians about EHR's do not present the results candidly, but rather are selective in what is reported - and what is omitted - and generally sugar-coated.

I then presented a candid physician survey on EHR's that was not very complimentary of the technology's value to real-world practicing physicians.

The following candid, informal nurse's survey about EHR's came to my attention the other day via Google.  The thread is on Facebook in the "Friend a Nurse" group pages and can be read at https://www.facebook.com/friendanurse/posts/654085127954821.

Apparently the thread got underway after someone posted the question "What do you think of electronic medical record systems? How was it implemented in your facility? Has it helped or hurt patient care? If so, how?" and a link to the June 25, 2013 Bloomberg News article "Digital Health Records’ Risks Emerge as Deaths Blamed on Systems" (http://www.bloomberg.com/news/2013-06-25/digital-health-records-risks-emerge-as-deaths-blamed-on-systems.html) that mentioned my mother's experience.

The EHR question posed on the "Friend a Nurse" Facebook page at https://www.facebook.com/friendanurse/posts/654085127954821.  Click to enlarge, or click Facebook link, which is public as of this writing.

I note that I had no knowledge of this, nor do I know the responders.  I did add a link to my Drexel website on health IT difficulties at the end of the thread, however, after I discovered it.

Here are the comments from both female and male nurses who belong to this Facebook group.  I redacted the names, however they can be seen at the Facebook page itself at the link above.

------------------------

Big problems when you have unexpected "downtimes".
July 15 at 1:10pm · 4

It is an absolute train wreck, I havent seen one record of mine that is not riddled with mistakes. Especially the allergies, they show me taking meds Im allergic too and not taking meds Im actually on.. A true mess!!And now the records are all intertwined. I dont like it at all!!
July 15 at 1:10pm

It is a nightmare!
July 15 at 1:18pm

I retired just in time so I don,t have to deal with this fiasco
July 15 at 1:19pm via mobile

IT SUCKS
July 15 at 1:19pm

I don't like them; my doctors don't like them; how it will affect patient care is still a 'jury out' matter, but we can guess it will NOT help.
July 15 at 1:30pm

our Rural Community Healthcare system is just now switching over to this..along with our hospital switching over to a totally new computer system..the 2 systems do not talk to each other..In my personal experience I find that the "computer" world takes us away from Direct Patient Care.(to busy playing "ring around the Rosie" on the computer..
July 15 at 1:40pm

I like them, but it is frustrating having "downtime."
July 15 at 1:41pm

I hear patients stating things like "my doctors don't know who I am because they don't look at me they are glued to the computer". It saddens me patients feel less valued. I've worked in places where they've had paper charts and places computerized. Seems the computers are redundant and I personally prefer paper charts. Chart one assessment not one assessment 4 different places.
July 15 at 1:44pm via mobile

It looks to me like physicians are cutting and pasting old histories and physicals, complete with the errors. Doctors in a local ER charted complete physicals on me when they did not get closer that 5 feet away. The records are difficult to read, difficult to find information, and not number in chronological order.
July 15 at 1:47pm

I dislike it . Besides the down time find it very impersonal . I don't feel as if I am giving my full attention to my pt, nor do I feel my PCP is hearing what I ' m saying . They are to busy putting in info on the computer . As for the down time you then have to work late to put in the info gathered while the system is down.
July 15 at 1:47pm via mobile

Electronic charting takes the skilled nurse away from the patient and puts them in front of a computer. Its NOT best for the patient or staff - the people who build the programs have not been at the bedside for eons....so the programs are time consuming, redundant, and inefficient.
July 15 at 1:51pm

I like EMR very much. The system we use is Allscrips, it is not perfect, but the benefits outweigh the problems. For example, I find most issues are human errors, such as poor spelling, incorrect entry in the proper records, entering incorrect doses. I love the fact that I can actually read and do not spend time deciphering not only the doctors writings, but my coworkers. I like having all the records in one place. There are issues for sure, but some of the issues is from companies who chooses to,purchase low quality EMR packages with poor support. The systems also need to be more standardized and "speak" to each other better. And folks at the end of the day it is your license at risk, do the things you were trained to do in nursing school, the 5 Rs remember those?
July 15 at 1:53pm via mobile

we are starting on it, let you know
July 15 at 1:53pm

In general I dislike it. If it 'goes 'down', you end up being unable to obtain vital information. With the federal system we did have both the computer records and the paper records. This was fine with inpatient informaton. I dislike it when my computer crashes and I can't get anyone to come look at it or fix it. They had a message line which we never had a call back from. I'd have a whole dept be down and non one to repair it. It's very frustrating on a triage line. This made scheduling appts impossible. Lack of vital information could be lethal to critical care patients...Far less pro's than con's. It's just a bad decision all together..
July 15 at 2:01pm

if THE GOVERNMENT CAN GET INTO YOUR RECOREDS SO CAN ANYONE they can hack anywhere now a days and it is scary///
July 15 at 2:05pm

anyone over 25 most likely hates it
July 15 at 2:09pm

I quit 2011...did CPOE no issue but more more is coming seems like q mo. or so keeps adding dig. stuff...hosp. worked with kept changing sys...used to ask myself why fix when not broken also once you got use to it thats when they change...they shld hire more nurses aux. ppl...do not know what to do with their money. Stressout...no more nursing for me . New grads savvy but this boomer did it for 38 yr. Enough is enough!!
July 15 at 2:14pm via mobile

Takes time away from pt care too much:-)
July 15 at 2:34pm

I work in a hospital and I hate it! I feel like I spend more time looking at the computer than at the patient. We have to document the same thing in multiple areas...big waste of time! Also our ER and OR's use a different program and we are not able to access this information when a patient is admitted to the floor. We also use Physician OE and the system we have it is hard to get back to look at an already viewed order. I feel this is dangerous and orders are missed all the time. It is just a ticking time bomb before someone is going to get hurt!
July 15 at 2:35pm

The med was there then disappeared.....software is only as good as the person using it. A PERSON DELETED THE MED! Pharmacies, nurses, and MDs use the computer did it as an excuse. Never understood how I corrected MARs every month and they were worse the next month...the computer did not do it alone. I dislike the MD playing on the computer and half listening to me.
July 15 at 2:38pm

Recently I have had md's not put a patient back on home meds because he/she could put them in correctly. I had to call the doctor on call at night to get these medications in place. The pt was also missing vital medications they needed for their diagnosis. I feel like in some cases emr is not safe. There however some cases where emr is helpful.
July 15 at 2:43pm

it will get better with time...
July 15 at 2:45pm

I worked at a VA until I retired, and I loved it. It is so much easier. Lets face it, anyone that wants your information is going to get it anyway.
July 15 at 2:57pm

I have used EMR in hospitals, home health and hospice for the past 20 yrs. When used within the same corporation w many offices it is very efficient. In that state corrections dept it was very helpful w continuity of care. the medical record follows the inmate to what ever unit they may transfer to. HIPPA is even more important with the EMR systems.
July 15 at 3:14pm

We just changed our system to a new one. It took a large group of staff over 18 months to develop our documentation system. The nursing portion is great. The med ordering part is difficult to use. The docs are all complaining about the system. They want to continue writing their orders.
July 15 at 3:17pm via mobile

We have had epic for over 5 yrs it is a great system.just wish computers worked better always having to shut down and reboot. Has saved us a few times with preventing med errors.covenant healthcare did a great thing when they got this system
July 15 at 3:18pm via mobile

I think it is an injustice to the Patients We are more than a computer file
July 15 at 3:24pm

It helps with a history when a patient is unable to provide
July 15 at 3:29pm via mobile

Plus it may have contacts address patients previous baseline behavior I'm a psych nurse so we utilize this type of system
July 15 at 3:30pm via mobile

Takes time away from patients, goes down too often, difficult when hospitals change systems. There should be a universal system, so info can be shared.
July 15 at 3:40pm via mobile

EPIC is terrible when it comes to outpatient chemotherapy and research. It is cumbersome and takes so much time away from patients. EMR's are here to stay and I think it's a great thing, for the most part, but sheesh make it easy on the provider, will ya?
July 15 at 4:07pm

we fear medication errors because some doctors start up home meds that are no longer correct. getting used to it is the hardest. the younger nurses are much more efficient and comfortable with it.
July 15 at 4:16pm via mobile

I agree with Noelle, it took focus away from the patient because it was cumbersome and repetitious, and because of the environment we had to keep the people moving through recovery....so it was dreadful. I was happy to retire and leave it to others to deal with.
July 15 at 4:30pm

I've worked with electronic T-system, Promed blue, Meditech, etc and all have their advantages and disadvantages, but the major disadvantage is that we don't do patient care anymore...we do computer care...I could also go on and talk about the fact we also don't get to spend as much time with our patients because of patient ratios and patient loads and the computer charting we have to get back to...
July 15 at 4:32pm via mobile

you are right on target here.....I retired because of this, there is very little patient care, it is indeed computer care !
July 15 at 5:00pm · 1

Nursing Informatics Institute How has nursing been involved in the planning and implementation of these systems? Feel free to share your experiences, it is very interesting to hear about your practice.
July 15 at 5:15pm

I love the electronic records. I do not love all the different styles ect programs out there. So many glitches. Patient's need to be proactive and as involved in their healthcare and that of their loved ones as possible. That means bringing ALL of your med bottles with you to each and every doc visit you go to. I don't care how many times or how many diff docs you see in a week, ALWAYS take ALL of your meds in the ORIGINAL bottles. Where I work there is 100+ doc's in this group, each doc office has access to same record I see when the patient comes to us. Each doc office can ad or make changes to the chart accordingly, so if you don't bring your meds with you to each visit and doc A changed a med and made the notation in the chart we see it but can't verify it. ALWAYS keep an updated list of meds in your wallet/purse for those emergencies when you don't have your meds. Include on this list, your surgical history, your medical history(Diabetes, hypertension ect ect ect), who your PCP is and a #, allergies, blood type, your wishes as far as DNR ...... It will save your loved ones precious time and allow them to focus on you, and not that new pill doc so & so started you on for her diabetes, I think. Anyway, with so many spoons in our medical records here, I catch mistakes all the time where a med has been deleted/added ... By another office. Usually because the patient did not bring the meds, or the patient is a poor historian of their own medical history and the family has no clue. Be proactive people, don't trust us to do it all. Get the dam electronic records fixed so they make sense, and stops all this confusion ..... Why so many different types and formats are needed is beyond me.
July 15 at 6:01pm 

not the systems that cause the problems, staffers that program only what they think is important when making diagnosis.
July 15 at 6:37pm

Love it - but when they go down.....
July 15 at 6:39pm

Mostly like it. Rather type than write. Does take more time than paper note, but overall I like it. I agree when I see patients & when I or my family is the patient, MD hardly looks at you; too busy inputting data.
July 15 at 6:52pm via mobile

No Comment.
July 15 at 6:52pm 

it is a huge improvement! and a potential life saver - no more figuring out what that handwriting is saying.
July 15 at 7:13pm

I generally like EMRs but some programs are so damned redundant (charting the same IV start every time you admin an IV med?) and/or lacking in -- how do I put it? -- intuitiveness. Sometimes I really wonder if anyone actually working with patients was involved in the design or implementation of some of the programs we use.
July 15 at 7:31pm 

Has it's good points and bad points. But I spend more time on the computer, then at the bedside.
July 15 at 7:55pm

I think computer charting has went way overboard and takes the nurse away from the bedside. How does family view nurses that are at the desk on the computer all the time?
July 15 at 8:27pm

it is disconcerting to the patient and or family if the health care provider starts firing questions and then spends the entire visit looking through the chart instead of listening to the patient's effort to provide a history of symptoms. No eye contact diminishes the interaction significantly!
July 15 at 9:15pm

for some things they are O.K. but everything no. Maybe scanned for some things. Now I have not thought out a plan for which, maybe someone with more time than I have could do a better job.
July 15 at 11:36pm

Haven't seen it work too well.
July 16 at 1:04am

It takes a lot of patience to get it implemented into a facility. The inservices that we
have had are few and basically it is a learn as you go. When everyone is finally sure of how to do it, it will be OK but is taking a long time for all of it to be taught to us
July 16 at 7:31am

mountains of paper, I mean mountains...
July 16 at 10:22am

as nurses, we are buried in paperwork... so are the docs... looking for a way out, we all THINK the digital answer with EMR is THE way... BUT nobody has proved it is superior, or really saves time or workload... and now the GOVERNMENT is pushing us into a costly and complex system
July 16 at 11:14am

------------------------

I think the comments (largely negative with several "positive but with significant concerns") more accurately reflect EHR reality "in the trenches" than the marketing propaganda emanating from government, the health IT manufacturers, the academic pundits, and other "see no evil, hear no evil, speak no evil" triple-simian hyper-enthusiasts.

On EHRs:  see no evil, hear no evil, speak no evil

Of course, the hyper-enthusiasts will call these opinions "anecdotal", but as one investigative reporter who does work in the EHR sector opined when sent the Facebook page:  

"That's a lot of anecdotes."

-- SS

Facebook Revisited: Does the Platform Help or Hurt Users (or Both)?

The benefits and challenges of social media for public health are a frequent topic on Pop Health.  For example, I've explored the influence of these platforms on emergency response, increasing the number of organ donors, and health activism.  However, one of the debates that I hear the most among public health colleagues relates to Facebook.

Does it isolate users?  Does it connect users?  Does it do both?

Earlier this year, my colleague Elana Premack Sandler explored this debate as it relates to loneliness.  Inspired by a feature in the Atlantic Magazine, Elana asks key questions like, "Is Facebook part of the separating or part of the congregating?"  She also mentions concerns about how Facebook (and other social media platforms) affect our social skills and therefore our friendships.

I thought of Elana's writing as I read a new post on the Atlantic website today, "Are Your Facebook Friends Stressing You Out?  (Yes.)".  This post highlights a new report out from the University of Edinburgh Business School.  The report caught my eye because it identified a very specific cause of stress for Facebook users.  The more groups of "friends" a user had (e.g., family, real life friends, co-workers, etc), the more anxiety they had because there was a greater chance of offending someone with their posts.  The report stated that the greatest anxiety came from adding parents or employers as Facebook "friends".  As Megan Garber writes so eloquently in her Atlantic post, the stress comes from Facebook forcing users to "conduct our digital lives with singular identities".  The way we speak or act around family or friends or co-workers must jive on Facebook, or we run the risk of offending someone.  I'm sure many of us saw this conflict a few weeks ago when political and election posts ran rampant on Facebook!

The anxiety described above is interesting, because ideally what we would hope is that Facebook provides a source of social support to users.  Social support occurs when one is cared for by others (via emotional, tangible, or informational support).  The presence or absence of social support is a factor related to public health issues, such as suicide.    

So after reading through the various posts/articles, what do I think about my opening questions about Facebook?

Does it isolate users?  Does it connect users?  Does it do both?

I think it does both.  I have seen it do both.  For example:

Isolation:  I have spoken to friends and colleagues who feel terrible about themselves or their lives after scrolling through their Facebook news feed.  A friend with chronic illness feels isolated hearing about the latest vacation or new job taken by her "friends".  A friend suffering from infertility can't bear one more picture of a "friend" and their newborn.  I think much of this results from the "whitewash" that many of us put on Facebook.  We often paint a picture for our Facebook friends, full of engagements and babies and fun events.  

Connection:  Earlier this year I watched a suicide intervention unfold on Facebook via the comment section under a post.  A friend of a friend posted a suicidal message on their Facebook wall.  Within minutes, "friends" reached out in the comments.  However, not only did they "speak" to the person, but they interacted with each other and followed up in real life.  One comment read, "Did someone go to his house?"  The next comment read, "I went to his house and I called his parents".  After he was taken to the hospital, a comment was posted to inform all the friends that he was safe.  As a public health practitioner that worked in suicide prevention for years, I was amazed with what I saw. 

So what can we do to reduce the isolation/anxiety and increase the connection?  You can certainly start by exerting your control over your Facebook account.  For example:

• Create a policy about "groups of friends" that you accept into your circle.  I know lots of people that do not accept requests from co-workers or parents.  They make it clear to the individual that it is nothing personal, they just have minimal friends with which they share intimate information.
• Use the privacy settings!  You can control who can see your posts.
• Find and use the unfriend button!  I have done this frequently.  If someone posts messages that are offensive or disrespectful regarding something that I've posted- I get rid of them quickly.
• Take a break from Facebook.  If you realize that Facebook is making you feel bad about yourself, take a break or disable your account.  Use that time to connect with your in real life (IRL) friends or family.

Tell me what you think!  

• Does Facebook isolate and stress us?  
• Does Facebook connect us?
• What other strategies can help to reduce the isolation and increase the connection on Facebook or other social media platforms?

Facebook Adds Organ Donation To Timeline: Should We "Like" It?

Typically, I post on Wednesdays.  However, with so much chatter about Facebook's announcement, this felt more timely.
Starting today, you can add your organ donation status to your Facebook timeline using the "share life" tool.  If you are already registered, you can share your story about where and why you decided to become an organ donor.  If you are interested in registering, you can follow links to official donor registries.

ABC has been a primary news source for this announcement, interviewing Facebook CEO Mark Zuckerberg, demonstrating how to use the "share life" tool, and discussing myths and facts about organ donation.

Scanning Facebook and Twitter today (especially among my public health colleagues), the response seems to be overwhelmingly positive.  From my perspective, the Facebook tool has the potential to be effective (i.e., increasing the number of registered donors) because it focuses on action.  The tool is not for education.  The tool actually links to registries so that you can sign up.  The tool aims to increase the visibility of already registered donors, which in turn will influence others to sign up.  The tool aims to decrease the stigma and secrecy of talking about end of life decisions by putting it right up there next to your birth date and relationship status.  This may also influence others to sign up.  In previous posts, I have written about public health campaigns that use social media in order to reduce the stigma around an "undesirable" topic (e.g., STD testing).

Although I am 100% supportive of the mission of increasing organ donors and am familiar with the dire need for donations (e.g., 18 people will die each day waiting for an organ), I have a few reservations about "share life":

In today's New York Times coverage of the Facebook announcement, I read a sentence that concerned me (I added the underlining):

"The company announced a plan on Tuesday morning to encourage everyone on Facebook to start advertising their donor status on their pages, along with their birth dates and schools — a move that it hopes will create peer pressure to nudge more people to add their names to the rolls of registered organ donors".

I consider declaration as an organ donor to be a medical decision.  In public health and medicine, we strive for patients and the public to make such decisions from a position that is informed and lacks pressure from physicians or family or friends.  Therefore, I have reservations about people signing up without educating themselves first and/or because they feel pressure on Facebook.  Just a few weeks ago, I posted about "hashtag activism" and how easy it has become to get involved in causes via social media.  Are we as thoughtful when we participate in causes on Facebook as when we participate in real life?

My other ongoing concern is regarding the proper security and use of personal information that is gathered by Facebook.  Will your organ donation status result in particular advertisements being sent your way?  I remember updating my Facebook status to "engaged" 4 years ago and being overwhelmed by the wedding planning advertisements on my page.  There is increasing public outcry regarding privacy settings and the personal information you enter being used for Facebook to attract advertisers and other business opportunities. 

Again, I am 100% supportive of the organ donation mission.  I think the reach of Facebook offers tremendous public health opportunities (including the possible elimination of long wait time for organs).  While that is an attractive outcome, we must always remember to focus on the ethics of the process as well.

What do you think?

•  Facebook has become directly involved with several public health issues (e.g., suicide, bullying, organ donation).  Are their strategies effective?  Why or why not? 
• Do you foresee any unintended consequences from the organ donation tool?
• Will you include your organ donation status on your Facebook timeline?  Why or why not?

 

"Hashtag Activism"- Is It Working For Public Health?

Last year on Facebook, my timeline was suddenly filled with status updates of just one word.  Red. Black. White.  "What is this?" I thought to myself.  It turned out that it was a breast cancer awareness campaign.  Facebook users were listing their bra colors to help prevent breast cancer.  And there are tons of these public health campaigns all over social networking sites.  "Like" our Facebook page to prevent cancer!  "Re tweet" this message to prevent heart disease!  For those of you familiar with my blog, you'll remember that I think "raising awareness" is the most counter-productive phrase used in our work.  It is not specific enough to measure for change and (on its own) it will not change health behaviors.  

So I thought of my frustration with these campaigns as I read a great article in the New York Times this week called, "Hashtag Activism, and Its Limits".  David Carr writes eloquently about the ease of supporting a variety of causes:

"If you “like” something, does that mean you care about it?  It’s an important distinction in an age when you can accumulate social currency on Facebook or Twitter just by hitting the “like” or “favorite” button.

The ongoing referendum on the Web often seems more like a kind of collective digital graffiti than a measure of engagement: I saw this thing, it spoke to me for at least one second, and here is my mark to prove it".

I like that David brings up the question of engagement here.  Many of these public health campaigns on social media just strive for "likes" on Facebook or "hits" on a website or "re tweets" on Twitter.  And not that they mean nothing, but those measures are just the tip of the iceberg in measuring audience engagement.  And audience engagement (beyond "raising awareness") is what could actually lead to public health activism, knowledge change, and ultimately behavior change. Leslie Lewis gives a great overview of Return on Engagement (ROE) on her blog "digital.good".  According to Leslie, ROE measures tend to be more qualitative and measure message reach and spread.  In addition to "likes", ROE also measures things like brand/campaign awareness, comments, shares, and returning visitors. 

I certainly do not think that all public health campaigns delivered via social media are ineffective.  On the contrary, I think that social media is an incredibly powerful tool for public health.  David Carr makes similar comments later in his article.  Challenging his initial skepticism of web activism, he lists several recent "campaigns" that have been quite effective (e.g., the reversal of Susan G. Komen de-funding Planned Parenthood).

However, to use social media effectively in public health, we must be strategic and we must evaluate.  

Some sample questions that I ask program planners:

• What is the goal of the campaign?  (e.g., to drive traffic to your website; increase hotline calls; increase specific behaviors like breast self examination?).
• How will the campaign activities (logically) lead to the desired goal/outcome?
• Are your goals/outcomes measurable?
• Have you thought about evaluation before launching the campaign?
• Besides the ideas listed above, how are you measuring "audience engagement"?

 
 What other questions should we be asking?