July 22, 2015

Unpacking Privacy

 

  

 

 

 

Pamela Ressler @pamressler

Privacy is an ambiguous, powerful concept that, while meant to protect individuals, often shuts down useful conversations and innovations. As we continue to unpack our #MedX topic, Privacy: Preventing Harm or Innovation, by flipping the panel and actively engaging conversations I am struck by the notion that perhaps the word privacy does not fully address what we are examining in the context of social media and online communities.  The Merriam Webster dictionary defines privacy as "the state of being alone: the state of being away from other people: the state of being away from public attention." If we are engaging in online communities can or should we expect privacy?

Jodi (@jsperber) pondered in her initial #MedX panel post, What's Your Relationship with Privacy...Um it's Complicated, that when we use the term privacy in this context, are really responding to a lack of control of the dissemination of the information we are sharing? Perhaps this is rooted in the difference between privacy and confidentiality. Confidentiality refers to the ethical grounding of the patient-provider relationship. Information shared is not divulged without the express understanding of both parties. Are we uncomfortable with the perceived violation of this ethical concept  when we openly share health experiences in the public forum of social media? Do the benefits of connection outweigh the risks of information sharing? Is our digital footprint truly controllable?

In 2011, when my  Tufts University School of Medicine colleagues and I surveyed patient bloggers in Communicating the Experience of Chronic Pain and Illness through Blogging, we found the majority of bloggers chose to publish their blogs on public, openly searchable platforms (such as Blogger, Wordpress). These blogs were frequently shared and read by friends and family, and potentially a broader audience of unknown readers. The issue of privacy/confidentiality did not seem to be as prominent as it is today. Did the controlled ability of blogging; being able to edit, revise and then share  lend a level of perceived privacy even though the information shared resided in a public space? Was there an unstated expectation of confidentiality between blogger and her/his audience? Has the increased prevalence of social media and online sharing changed our perception of the concepts of privacy or confidentiality?  It is interesting to consider whether participation in online communities and the rapid, real time conversations in spaces such as Twitter or Facebook feels more vulnerable and public than the more controlled method of blogging.  Do online communities and real time digital interaction with others support the benefit of group empathy but at the same time expose participants to increased fear and vulnerability?  

As the ability to connect through social media evolves,  in health information sharing and creating more personalized medical systems,  let us begin to unpack privacy by examining and investigating broadly this elusive, ambiguous, powerful concept.

Do we have you hooked on this topic yet? We are thrilled to throw open our sandbox to those who want to think, discuss and create with us. This is the essence of a flipped panel. The conversation continues and evolves  through each interaction… please join us, Colleen Young (@colleen_young), Susannah Fox (@SusannahFox), Wendy Sue Swanson (@SeattleMamaDoc), Jodi Sperber (@jsperber) and me, Pam Ressler (@pamressler). We will be using the hashtag #MedX.

July 12, 2015

Farm Share Bingo


If you want to increase your mindfulness, join a CSA. A highlight of my summer is the weekly mystery bounty from our farm share or CSA (community supported agriculture).

We have participated in the First Root Farm CSA for several years and I always enjoy arriving for pickup on Tuesdays to discover what my share of the week's harvest will be. I think of this weekly adventure as farm share bingo...a root vegetable or two unused from the previous week pairs perfectly with something from this week's share, along with pantry items at home...and BINGO!

Beets, carrots, baby lettuces and spicy greens from our farm share came together with a couple of apples and a can of pineapple from the pantry into Glowing Salad this week (from my collection of favorite recipes from Debra's Natural Gourmet)...it's as pretty as it is delicious! BINGO!





May 18, 2015

My 6 Word Summary of the Mad Men Finale

OK, I'll admit it I was a Mad Men groupie, tuning in each Sunday night to have a glimpse into the dysfunctional fictional lives of the gang at Sterling Cooper advertising agency. I think the show exposed the underbelly of the not so nice features of being human, and along the way also shed light on the innate qualities of resilience. A sense of resilience wasn't predicated on noble qualities of compassion or empathy, but on self-preservation and survival.  Whatever you thought of the moral ambiguity the characters exuded and the choices they each made during the seven seasons of Mad Men, in the end the commonality for all was meeting adversity with a sense of resilience, having taken control of their experience but not the outcome of their choices.

My six word summary?.... Resilience wins even in flawed humans




May 12, 2015

May Morning Haiku

After a long winter, each bit of spring brings gratitude. Does mindfulness open us to be more grateful? What do you think? 

May Morning

Window sash lifted
rain's syncopated rhythm
lilac-scented breeze


May 7, 2015

Still on the Journey to Ithaca

It is commencement season, a time of new beginnings and setting forth on new adventures. This week is also Nurses Week, a week set aside each year to honor nurses. I have been reflecting on my nearly four decades in the nursing profession...what I imagined as a young nurse setting sail into the world of healthcare and where I have found myself so many years later.

Several of my nursing colleagues and I have been thinking about our stories or narratives as nurses -- where have we been, where are we going, what has shaped us and what gives our work meaning? #WhyINurse

So, in the spirit of this reflection and with immense gratitude to those who have allowed me to learn from their lives and teaching, I share the commencement address I gave several years ago as I completed my graduate work at the Tufts University School of Medicine. Several years later, I am happy to say that I am still discovering my way to Ithaca. My wish for each of you is for your journey to be long and circuitous as well.  ~Pam




Commencement Address
Tufts University School of Medicine: Pain Research, Education and Policy Program

To the faculty, administration, fellow graduates, and especially to my wonderful family; I am both incredibly honored and extremely humbled to stand before you today. 

It has been 32 years since I last wore a cap and gown and I am reminded today of that spring day so long ago in Ann Arbor, Michigan.   In 1979, the adventure on which I was embarking appeared so clear and direct, much like Homer’s Odysseus as he set off from Troy enroute to Ithaca.  But as with Odysseus, we often find our journeys far more complicated than we ever anticipated…meeting not only with trade winds and gentle seas but also with violent storms and towering waves that can batter us and throw us off course.  And so it is for the patients we meet each day in healthcare.  They, too, are voyagers on their own Homeric journeys, each filled with unique, authentic stories waiting to be told. It is up to us, in healthcare, to elicit, acknowledge, and honor these stories, to bear witness to their individual journeys and to help them navigate through difficult passages.   
When we first enter the world of healthcare our mission seems clear and direct – we want to quickly fix what we see as broken, to cure what we see as diseased.   While this is a noble mindset, we often miss the opportunity to heal when we blindly set out in this direction.  What I have learned is that often we cannot cure, no matter how desperately we try, but the potential for healing is always possible.  This statement may seem  incongruous to what we see as the measurement of medical success.  But, as we look broadly at what healing really is… isn’t it all about reducing pain and suffering…about living and dying with dignity, grace, and a sense of purpose?  We meet our patients at many points on their journeys and I see our work as assisting them in gathering the necessary tools of healing to find safe passage on their voyages. 

During the course of my studies here at Tufts I have discovered many tools of healing.  The Pain Research Education and Policy program was not on my navigational charts when I set off in 1979, but I am so grateful that I found my way here.  Through my work with inspirational faculty mentors, especially Dr. Bradshaw, Dr. Glickman-Simon and Dr. Carr, as well as Dr. Gualtieri in the Health Communications program, I have explored pain not only as a physical manifestation of injury or disease, but also as a complex pattern of psychosocial and cultural components that contribute to a sense of suffering.  Addressing the suffering has a direct impact on reducing the sensation of pain.  The Pain Research, Education and Policy Program has allowed me to explore the intersection of modern medicine, technology, ancient healing practices of the body and mind and spirit, and the innate human desire to survive adversity.  It has given me a voice in advocacy and scholarship by helping me to articulate the meaning of pain and suffering for individuals and society.  For this I will always be grateful.   

Some of you may be familiar with the poem, Ithaca, by Constantine Covafy.  It is a poem that has kept me company on my journey and I would like to offer it to you as a metaphor for this commencement, as each of us sets forth on new journeys and adventures:  

When you set out on your journey to Ithaca,
pray that the road is long,
full of adventure, full of knowledge.
The Lestrygonians and the Cyclops,
the angry Poseidon -- do not fear them:
You will never find such as these on your path,
if your thoughts remain lofty, if a fine
emotion touches your spirit and your body.
The Lestrygonians and the Cyclops,
the fierce Poseidon you will never encounter,
if you do not carry them within your soul,
if your soul does not set them up before you.

Pray that the road is long.
That the summer mornings are many, when,
with such pleasure, with such joy
you will enter ports seen for the first time;
stop at Phoenician markets,
and purchase fine merchandise,
mother-of-pearl and coral, amber, and ebony,
and sensual perfumes of all kinds,
as many sensual perfumes as you can;
visit many Egyptian cities,
to learn and learn from scholars.
 Always keep Ithaca on your mind.
To arrive there is your ultimate goal.
But do not hurry the voyage at all.
It is better to let it last for many years;
and to anchor at the island when you are old,
rich with all you have gained on the way,
not expecting that Ithaca will offer you riches.

Ithaca has given you the beautiful voyage.
Without her you would have never set out on the road.
She has nothing more to give you.

And if you find her poor, Ithaca has not deceived you.
Wise as you have become, with so much experience,
you must already have understood what these Ithacas mean.

And so, as you set sail from this commencement for your Ithaca…I wish you a long and prosperous journey, the privilege of listening to many stories, and the wisdom of healing.
Thank you and Bon Voyage.