Blog post by Colin Hung
This week I have the privilege and honor of attending my second Cinderblocks event in Grantsville MD. #Cinderblocks3 is organized by Regina Holliday @ReginaHolliday – the amazingly talented ball of energy who not only started #TheWalkingGallery, but also advocates nationally for patients to be included in healthcare and locally for the arts in her community.
Regina and I both share a love for science fiction, fantasy and comics. We’re both proud geeks J. In particular we both love Doctor Who and it’s why there is a TARDIS on my Walking Gallery jacket. In Who-speak, Regina is a “fixed point”. A person around which a universe is anchored. Things happen around Regina. There is always energy and movement whenever you are around her. It’s impossible to resist and sooner or later you find yourself enjoying being part of the swirling constellation of stars.
In the common-tongue, Regina is the instigator/leader of multiple social movements. The encyclopedia Britannica defines social movements as thus:
Loosely organized but sustained campaign in support of a social goal, typically either the implementation or the prevention of a change in society’s structure or values. Although social movements differ in size, they are all essentially collective. That is, they result from the more or less spontaneous coming together of people whose relationships are not defined by rules and procedures but who merely share a common outlook on society
The Walking Gallery that Regina started is a healthcare movement – one that has a goal of raising awareness of the needs of patients in a system that often marginalizes what they (we) can bring to the table. Each member of the Gallery is person that is member of this movement. Some work from within the system to affect change, some are self-proclaimed “outsiders” using the force of their character to change organizational behavior, some work at the national level while others prefer a hyper-local approach. Together The Walking Gallery is a collective that is working to change healthcare for the better, starting with the patient.
But has patient advocacy, like what The Walking Gallery embodies, become a necessity in today’s complex, numbers-driven healthcare system? In other words has healthcare become so large and unwieldy that an army of patient advocates is needed just to be the counterbalance?
Dr. Fazrad Mostashari @Farzad_MD, former National Coordinator for Health IT and Lygeia Ricciardi @Lygeia former lead for Consumer eHealth at the Office of the National Coordinator (both members of #TheWalkingGallery) were both instrumental in creating a national action plan to support consumer engagement in healthcare. In a paper published in 2013 they wrote:
Patient-centered care is widely considered one pillar of a high-performing, high-quality health care system. It is a key component of many efforts to transform care and achieve better population health. Engaging patients and their caregivers to play an active role in their health is a critical element of patient-centered care, yet patients are an underused resource in the health care system.
If patients are key component to a high-performing healthcare system, then patient advocacy is the social movement that can help propel patients to a seat at the proverbial table. Without patients knocking (sometimes pounding) on the door, demanding to be part of the healthcare conversation, would any progress or real change be happening around patient-centeredness?
Helen Bevan @helenbevan, currently the Chief Transformation Officer at NHS Horizons Group and a disruptor within the NHS since 2001, has long believed in the power of social movements to transform healthcare delivery:
The social movement perspective fundamentally challenges the way we have learnt to organize and lead change in the NHS. As healthcare leaders, we need the courage to make a personal stand for what is right. We need to make a profound connection with the deep-seated values that brought us and our colleagues into healthcare in the first place. We need to challenge the status quo as necessary and tackle the tough issues head on. At the root of it all, we have to believe that a different future is possible and that the people we work with and serve have the capability, energy and motivation to deliver the changes.
With that lens, healthcare definitely can use more social movements – informal collectives of people willing to stand up and affect change. #TheWalkingGallery is one example of a social healthcare movement. There are many others: #s4pm, #HealthITChicks, Change Day USA and even #hcldr.
Join the #hcldr community on Tuesday May 17th at 8:30pm EDT (for your local time click here) where we will discuss the phenomenon of healthcare social movements:
- T1 In today’s healthcare system have patient-based social movements become a necessity to protect patient interests?
- T2 Do you believe that healthcare social movements like #hcldr & #TheWalkingGallery have an impact?
- T3 Why do you choose to be part of a healthcare social movement? (hint by being here on #hcldr you kinda part of one)
- T4 What advice would you offer to someone who is debating whether to get involved in a healthcare social movement?
“A National Action Plan To Support Consumer Engagement Via E-Health”, Lygeia Ricciardi et al, Health Affairs, February 2013, http://content.healthaffairs.org/content/32/2/376.full, accessed May 15 2016
“Why you need a patient advocate in the hospital”, Karyn Feiden, Consumer Reports, February 7 2015, http://www.consumerreports.org/cro/news/2015/02/why-you-need-a-patient-advocate-in-the-hospital/index.htm, accessed May 15 2016
“How patient advocacy fortifies health information exchange”, Patty Enrado, Medical Practice Insider, April 16 2012, http://www.medicalpracticeinsider.com/blog/technology/patient-care/professional-development/how-patient-advocacy-fortifies-health, accessed May 15 2016
“The physician is the ultimate patient advocate”, Kathryn Hughes MD, KevinMD.com, July 13 2015, http://www.kevinmd.com/blog/2015/07/the-physician-is-the-ultimate-patient-advocate.html, accessed May 15 2016
“Advocacy – A Question of Necessity”, Bettina Ryll MD, Inspire2Live Conference, January 23 2015, http://mediasite.mediamission.nl/Mediasite/Play/62cdd0f16e8b461ea23e8616c32bad0c1d, accessed May 15 2016
“Is there an advocate in the house? The role of health care professionals in patient advocacy”, L Schwartz, Journal of Medical Ethics, May 22 2001, http://jme.bmj.com/content/28/1/37.full, accessed May 15 2016
“The rise of the private patient advocate”, Ryan O’Reilly et al, HealthyDebate, April 16 2015, http://healthydebate.ca/2015/04/topic/innovation/patient-advocate, accessed May 15 2016
“Helen Bevan: Applying social movement thinking to health care improvement and reform”, Labor Management Partnership, April 18 2009, http://www.lmpartnership.org/stories-videos/helen-bevan-applying-social-movement-thinking-health-care-improvement-and-reform, accessed May 15 2016
“Palliative Care by the People, for the People: A Call for a New Grassroots Movement”, J Redwing Keyssar, Huffington Post, October 17 2014, http://www.huffingtonpost.com/j-redwing-keyssar/palliative-care-by-the-pe_b_5970838.html, accessed May 15 2016
“People’s health movement gains momentum”, Linda Gibson, The Guardian, July 19 2012, http://www.theguardian.com/healthcare-network/2012/jul/19/people-health-movement-public-momentum, accessed May 15 2016
“Social Movements and Health System Reforms: The Impact of the Arab Spring in Reconceptualizing Health Delivery in the Middle East”, Sonya Soni, Harvard College Global Health Review, November 12 2012, http://www.hcs.harvard.edu/~hghr/wp-content/uploads/2012/11/12S-Issue.26.pdf, accessed May 15 2016
“Health Care Reform and Social Movements in the United States”, Beatrix Hoffman, American Journal of Public Health, January 2003, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1447696/, accessed May 15 2016
The Walking Gallery at Cinderblocks 2