The Redefining Patienthood Project Launches - Aims, Goals, and Many, Many Questions Ahead

Our goal, above all else, is to make care better for patients, and to make it patient-centered. Information policy and health IT policy should serve that goal.

From: "Blumenthal: Tear down walls that block information exchange | Healthcare IT News."

For almost 3 months I've been working with one of my favorite recovering MDs, Carlos Rizo, to try and figure out what being an epatient really means, and why some of us 'level up' from self directed, n=1 personal advocacy to become mentors and wayfinders for others.

Some questions that haunted us after we'd closed the latest Skype chat window...Do we need new nomenclature to describe the experience of being the focal point of goods and services along the healthcare delivery spectrum?

What does the 'normal' patient think of 'patienthood?' Do patients want/need to put an 'e' in front of it?

The central tenet of our exploration is that those who are at the receiving end of medical care are also at the receiving end of 'naming' or labeling within the global healthcare delivery system.

We tossed around plenty of name-calling and talked for hours about our own feelings regarding labeling and patienthood, but finally arrived at the brilliant conclusion that this study was too big for coffee-cup and Skype discussions to define.

The only way to see how people feel about patienthood - and determine whether or not subjective claiming or refutation of the terminology and connotations and baggage we posit it carries weight in brick-and-mortar vs. online communities of care - is to ask.

So that's exactly what we're doing.

Today the Redefining Patienthood Project launches with the first in a series of short surveys.

Please, if you have feelings on the topic, and the subjective sharing of patient experiential narratives online concerns you, participate.

Our goal for the survey series is 150 participants. I hope to count many of you among them.

I promise not to take more than 2 minutes of your day as you complete the form here:


In every industry experts are "believed to have special knowledge of a subject beyond that of the average person, sufficient that others may officially (and legally) rely upon the individual's opinion."

Doctors, nurses, therapists and other allied health workers undergo rigorous accreditation, training, and higher education processes to become relied upon to delivery safe, effective care.

But, can patients be experts? And can they be regarded as such by healthcare workers?

Perhaps, but perhaps not.

Online sharing in peer 'expert' communities is well established with social networks designed for providers like WebMD and Ozmosis.

There now exists a wiki to help pharma and biotech researchers collaborate with peers: http://www.fiercebiotechit.com/story/wikis-open-drug-development-sharing/2009-11-23

But wherefore art the ePatients?

We are helping each other in networks like ACOR, Patients Like Me, and Cure Together, but what is it that drives us outside our self-interested shells to try and change others' trajectories? To provide support, assistance, tools, all by first owning or refusing the traditional patient nomenclature?

And what happens if we accept the 'epatient' moniker? Do we consider ourselves experts with a specialty scope of practice? I for example might be considered Jen McCabe, eP, with a specialty in experiential orthopaedic rehab.

But do the titles matter? One hypothesis is that some claim the 'epatient' label because it allows us to establish a reputation as an 'expert' which we can then monetize.

In any case, does our patient experience, like many other events which shape us personally and professionally, become so valuable in the market that we might begin to consider it an asset instead of a liability?

In simple, accessible language, the goals of the Redefining Patienthood Project are to explore the following themes and questions:
1. What "expert" means today
2. What "patient" means today
3. Can patients be experts? Review of experiential literature and survey(s)
4. Patients claiming expert status - is it already happening?
5. What is the new definition/definitions of "expert patient" or "epatient?" Are the terms synonymous?
6. What prescriptions for epatients to advocate/engage in the real world of hospital interactions does the community recommend?

Disclaimer: I am not an academic. I do not have anything higher than a Bachelor of Arts degree.

If you would like to discount these explorations as a result, feel free to do so. I encourage you, however, to approach this project in the spirit in which it is intended - as an exploratory beginning approach to the topic, rather than an authoritative end-point.

Although I was headed to Georgetown to participate in the Master of Health Systems Administration Program, I deferred and eventually declined admission to continue 'real world' learning, including a current fellowship at the Health Strategy Innovation Cell, Massey College, UToronto, where this project lives.

The desire to explore the power of naming and self-selected nomenclature for consumers in the healthcare planning and delivery ecosystem grew out of my own journey from patient advocate (in a local community hospital ED) to patient to activated patient to epatient advocate.

Some of you may be familiar with why I do what I do, but a detailed self-exam of my motivations and drivers is here:

And now, for those of you who are located within the hallowed walls of the academe, the gritty details:

Paper working title = I Am A Patient, A Survivor, A Coach! An Exploration Of How Sufferers Become Students And, Sometimes, Thriving Experts in Navigating the Medical System

Authors = Jen McCabe, Carlos Rizo, Neil Seeman

Affiliation: Health Strategy Innovation Cell

Corresponding Author:
Jen S McCabe
Kisaut Fellow, Health Strategy Innovation Cell
Massey College, University of Toronto
4 Devonshire Place
Toronto, Canada

Initial Outline:

I. Introduction
Discuss current patient definitions (Web scan, Wikipedia, WHO)
State why is this study needed?
State what would this study add?
Briefly summarize what is know so far: Conduct a very short Literature Review of academic studies examining patient/consumer nomenclature in peer reviewed journals
Briefly summarize what do hospitals say: Conduct Brief Review of Hospital Marketing Language
Briefly summarize What do patients say: Extract definition from e-Patients.net
Discuss why Social Media may have new answers

[CR]: II. Methodology
What design suits better your research questions? Describe the survey
Why Twitter?
Why crowdsource?
What questions are we asking?
How are we going to analyze the responses?
How many people are we going to ask?

[CR]: III. Results
[CR]: IV. Discussion
[CR]: V. References
M5S 2E1

Some of our research questions:

1. Can patients truly become healthcare navigation experts?

2. Are or can patients be regarded as healthcare navigation experts by health professionals (both those who treat the patient individually and those who participate in the wider system of patient care delivery)?

3. What is the role of patienthood today? In and out of the medical system?

4. What drives patients to become advocates for self? For others? To mentor 'e-patients' (including 'emerging' and 'online' patients)

5. Is patienthood an outmoded term? Could we (patients and/or providers) benefit more by abandoning it? By revitalizing it? By revising it?

6. What do the current semantics of illness and recovery and healing look like? Does the current lexicon need to be challenged?

7. Is the 'position' power of being a patient underestimated? By providers of care? By fellow patients? By patients ourselves?

8. Is there a progression from epatienthood --> participatory medicine ---> choice/control aware care? If so, what does this look like (in theory and in practice)? And is there more than one model?

My ultimate goal is to end this project at a new beginning point - a crowdsourced, community-oriented redefinition of patienthood that will drive discussions about 'meaningful use' and access to health information, as well as how organizations like the US FDA will examine the utility of social media in experiential patient knowledge exchange.

If you'd like to join the researchers working on this topic, please comment below. Your rigor, your inquiring mind, your curiosity, your experiences are all valuable and valued here.

What does patienthood mean to you?

And is this a term that needs revising and re-envisioning by the grassroots social media communities who use it in both a positive and pejorative fashion?

Posted via web from Jen's Posterous

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