The Untapped Potential
of Patient Activists
Lisa Gualtieri, PhD, ScM
Lisa.Gualtieri@tufts.edu
@lisagualtieri
July 17, 2014

Acknowledgements
 Thanks to
 Christine Nieves for her inspiration and support
 Beth Toner for her early support
 Many patient activists who gave their time
In memoriam
 Jessie Gruman, who
died on Monday
Three key questions
1. Who are patient activists?
2. What motivates patient activists?
3. How do patient activists work?
Methods
 Literature review
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Activated patients
Volunteerism
Leadership
Patient activism and patient activists
 40 semi-structured interviews with patient activists
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Prominent: ePatient Dave, Regina Holliday, Jessie Gruman
Less well-known: Gail Rae-Garwood, Crystal Brown-Tatum
Not known as patient activists: former U.S. Representative
Patrick Kennedy, screenwriter and director Michael Maren
 Survey on patient engagement with 368 respondents
Definition of patient activists
Most people are
patients or caregivers
Some experience
tragedies or major
health crises
Patient activists
Patient activists are people who leverage their personal health
experiences to try to improve healthcare or other peoples’ health
Terminology
 Patient or healthcare consumer?
 Patient activist or
 Patient advocate
 Patient navigator
 Health activist
 “Loud mouth patients”
 And more
Activated patient
 Activated patients (expert patients in the UK) have the
knowledge, skills, and confidence to manage their health
 Growing body of evidence: patients who are more
activated have better health outcomes and care
experiences
 Internal while patient activism is external
 Discussion
 Patient activists are activated patients
 Could patient activism be a later step on the current Four
Levels of Health Activation?
 Do patient activists activate others?
Volunteerism
 Volunteers help others
 Give of their time without any expectation of compensation
 Tend to be more knowledgeable healthcare consumers
 Their recipients benefit but they benefit with skill
development and improved physical and mental health
 Discussion
 Unlike volunteers, patient activists usually not involved with
organizations other than those they start
 Otherwise many similarities
 Do patient activists, like volunteers, accrue health and
wellness benefits and develop new skills?
 Are volunteers more likely to become patient activists when
faced with a health crisis?
Leadership

Adewale Troutman, MD, MPH, MA, CPH: Public health leadership is

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Jim Collins, “Good to Great”
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Having a clear vision and seeing what does not currently exist
Using creativity to see solutions to problems and forging partnerships
and coalitions
Having passion for their mission
Feeling compassion for others used to connect with others
Taking risks
Capabilities of leaders who take companies from good to great include
genuine personal humility blended with intense professional will
Discussion

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Patient activists take on a leadership role to plan and execute their
activism
What are the skills patient activists need to be effective?
Patient activists in history
 FDR in a speech about the needs of disabled children:
I myself have been through this ordeal, and I am a
symbol of what can happen when people with
disabilities are strongly supported
 Betty Ford raised breast cancer awareness following
her mastectomy and later raised awareness of
addiction after disclosing her alcoholism
 Princess Diana used her bulimia to promote eating
disorder awareness and treatment
Patient activists in history
 Candy Lightner, whose daughter, Cari, was killed by a
repeat drunk driving offender, with Cindi Lamb, whose 5 ½
month old daughter became a quadriplegic as the result of
a drunk driving crash, started MADD
 AIDS patient Ron Woodroof distributing unapproved drugs
through the Dallas Buyers Club

Many other examples: Ryan White, ACT UP
 Discussion
 Approaches from ACT UP and MADD are still in use
 Internet, social media, and self-published books are among
the platforms available now that have dramatically changed
patient activism and lowered the barriers
 Fewer stigmas to diseases like alcohol abuse, cancer, and
HIV that were only whispered about in the past
Controversial “celebrity patient activist”
 Against evidence-based medicine
 Jenny McCarthy, who, despite recent assertions that
she is pro-vaccine and has been wrongly branded as
anti-vaccine, has been influential in a way that goes
against the grain of evidence-based medicine
Which Jenny McCarthy should we believe?
Are these celebrities patient activists?
Are these celebrities patient activists?
Bob Dole, following
prostate cancer
treatment, had erectile
dysfunction (ED), and
worked to reduce stigma,
but did so in Viagra ads
Jennifer Hudson educated
people about weight loss,
but did so as a Weight
Watchers ambassador
Walter White, diagnosed with
Stage III lung cancer in “Breaking
Bad” and worried about his
family’s finances, decided to
manufacture and sell
methamphetamine
Celebrity patient activists

Arianna Huffington’s in “Thrive” describes how, due to
exhaustion and lack of sleep, she fell and broke her cheekbone
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Book is about the “harried dance that led to her collapse and to
her ‘aha moment’” and what she learned from it
Sleep featured section on Huffington Post
Peter Yarrow, of Peter, Paul and Mary: “The Colonoscopy Song”
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When cancer hits you personally, you understand the cruelty of
this disease, and then you really commit to doing all you can…
With colon cancer, you can prevent its onset with a
colonoscopy, a relatively simple procedure that provided me
with a crucial early warning when my colonoscopy turned up a
polyp
I only wish that Mary [Travers}'s advancing leukemia could have
been discovered and prevented by such a test
Who is NOT a patient activist?
Who is NOT a patient activist?
Joan Lunden: use my
journey to help
motivate other
women to get their
check-ups every year
Michael J Fox: advance the
pursuit of a cure
Patient activists in the news

Net system to prevent people from jumping from the Golden Gate Bridge
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Beth Toner, RN, wrote “Filling in the Cracks: The Fight for Mental Health”
about her experiences helping her adolescent son with mental health
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Beth Toner: “When I asked [my son] if I could share his story publicly, he said ‘Of
course. I hope what I went through can help others.’”
FDA meeting last week on morcellators for uterine fibroids
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Motion came from board member and former bridge district director John
Moylan, whose grandson, Sean Moylan, jumped off the bridge to his death
Diane Aronson: “Public testimony was so compelling”
Dr. Amy Reed:"Morcellators are a… failure of device safety, of medical selfregulation and federal regulation”
Debra Valverde: "I am waiting to die... I beg you, please stop morcellation”
Discussion
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Examples of patient activism in the news have commonality of using a personal or
family health crisis to help others
Share with the interviewees the desire to improve others’ paths through the
healthcare system, because, in the words of Beth Toner, “we have a long way to
go”
Locating patient activists
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Patient activists who are historical figures, celebrities, or in the
news, are visible
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There is no repository or listing of patient activists
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Speaker bureaus include patient activists under categories such as
patient experience or health and wellness or Patient Voice Institute
Speakers, with seven speakers listed, all affiliated with the institute
Search on “patient activist” in LinkedIn returned 21 results
Search on “patient advocate” in LinkedIn returned far more results but
it included both professional patient advocates and healthcare
professionals
Discussion
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Inability to easily locate patient activists may stymy efforts to conduct
further research or provide training opportunities
Raises once again the need for an accepted and commonly term to use
to label their activities
Interviews
 Key informant interviews are an appropriate method to
understand underlying motivations and attitudes of a
defined population
 Semi-structured interviews conducted by phone, in person,
and email with patient activists and experts
 Convenience sample of 40 interviewees identified through
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WSJ: “Patients Can Do More to Control Chronic Conditions”
NPR interview with Michael Maren about his movie, “A
Short History of Decay”
Twitter conversations on mental health stigma and breast
cancer
Interview subjects
Alan Brewington
Crystal Brown-Tatum Jessie Gruman
Pam Ressler
Alicia Staley
David Goldsmith
John Moore
Patrick Kennedy
Beth Sanders Moore Diane Aronson
Kara DiOrio
Paul Levy
Bill Tancer
ePatient Dave
Kate Deklerk
Paul Turner
Brad Love
Gail Rae-Garwood
Kim Witczak
Rebecca Brookes
Bradley Moore
Gerald Matczak
Kristin Meekhof
Regina Holliday
Cheryl Jones
Helen Haskell
Lisa McGiffert
Sammi Gassel
Chris Viveiros
Jack Barrette
Lucien Engelen
Teresa Sabga
Christine Bienvenu
Jessica Toussaint
Michael E. Festa
Tom Concannon
Michael Maren
Vernon Dutton
Christy Heitger- Ewing Jeff Stier
Interview questions
1.
Why did you become a patient activist? Was there
a specific incident or series of incidents?
2.
What were the steps you took?
9.
What advice would you give to patients who are
not currently activists?
3.
Were there barriers such as stigma or privacy at
specific points that you had to overcome?
10.
What do you believe organizations could do to
engage non-activists to provide feedback on and
promote healthcare innovations?
11.
What could organizations do to more effectively
promote initiatives to patients?
12.
What do you see as the ultimate measure of your
impact in terms of the number of people you
reach or the changes resulting from your work in
people’s lives, in health policy, and in medical
practice?
13.
Finally, can you recommend other people to
interview, either activists or non-activists?
4.
5.
agencies or health-related organizations including
the “patient voice”?
What have you done that has the greatest
impact?
What are the mechanisms you use, such as
speaking, writing, and social media, for
communication and outreach?
6.
What are the primary sources of satisfaction you
experience related to your activism?
7.
What are the primary difficulties or frustrations
you experience related to your activism?
8.
What do you think could help non-activists voice
their innovations and experiences on health care
issues relevant to themselves or to government
Content analysis
 Interview questions explored the nature of patient
activism and highlighted the reasons why people
became patient activists and what they do in that role
 From content analysis of the interviews we developed
 5 patient activist archetypes to encapsulate some of
the commonalities
 10 themes
Patient activist archetypes
1.
Career Patient Activists: Most vocal and
visible, epitomized by ePatient Dave, turn
patient activism into full-time career
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2.
3.
Strength: use of writing, speaking, social
media, and other forms of expression to
reach people with their messages
Challenge: earn a living, maintain visibility, get
their messages out, without being perceived 4.
as too extreme or evangelistic

Strength: use of writing, speaking, social
media, and other forms of expression to
reach people with their messages
Challenge: being burdened with a sense of
“not doing enough” and balancing their
activism with the rest of their lives
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5.
Strength: clear message and target audience
Challenge: being influential for limited time,
lack of passion or drive to sustain
Creative Patient Activists: Use creative and
artistic skills to express messages

Patient Activists: Similar to Career Patient
Activists but do less because of their health,
careers, or drive

Sporadic Patient Activists: Pursue a health
issue, dropped not necessarily because
success was achieved
Strength: how adeptly they use their
creativity to reach people
Challenge: impact can be diluted through
appreciation for artistry instead of content
Celebrity Patient Activists: Use their fame to
promote a health issue
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Strength is that their reach and impact
already exist although not as patient activists
Challenge: public perception of them can
change so their patient activism becomes a
double-edged sword career-wise
10 Themes
1. Commitment to improving healthcare and helping others:
Patient activists are committed and dedicated to improving
healthcare. Commitment is not impacted by their health, although
ability to execute may be
2. No choice: Many patient activists state that they don’t have a
choice – they need to do this, make sure that what happened to
them never happens to anyone else or that others benefit from
what they learned, even through family opposition
3. Connection with others: Many people become patient activists
because of the aloneness or lack of assistance that they had and
they seek to make the experiences of others better and more
manageable
10 Themes
4.
Health knowledge: Many sought to learn everything they could, and to
stay current, which they share

Crystal Brown-Tatum said, “I hear this all the time, ‘I had my first
mammogram today, thanks, Crystal.’ I hear from women who found lumps
because of what they learned from me and sought treatment.”
5.
Self-efficacy: They feel that their efforts will make a difference and
believe they will find success in their work as a reward, or
compensation, for putting personal matters on display and using their
time and skills to help others
6.
Silver lining: While it is doubtful that any patient activists would have
chosen their current path, many have a strong sense of satisfaction and
pride in what they do, and it may help them to process their health crisis
10 Themes
7. Series of health incidents: For some patient activists, multiple
health events led to their patient activism, which may include
their own and loved ones
8. Openness despite stigma: Patient activists speak openly about
the health crises that led to their activism even when there is a
stigma, or, perhaps, more so when there is a stigma in order to
help eradicate it
 Patrick Kennedy: My disclosure garnered a lot of media attention
 Gail Rae-Garwood: I have been a fairly private person up to my
diagnosis
10 Themes
9.
Reach and impact: Difficult to measure reach and impact of patient activists
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Arianna Huffington has great reach through Thrive and Huffington Post but not
necessarily great impact
Crystal Brown-Tatum teaches women breast self-exams with limited reach but
great impact when early detection and treatment saves lives
Diane Aronson may have never saved a life but has improved the quality of life
of thousands
10. Outreach tools and skills: Most patient activists use social media, speak at
conferences, start foundations, join advisory boards, write books, raise money,
work on policy, or testify at government agencies
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Fewer paint, write screenplays, write poetry, or engage in other creative
pursuits
Efforts occur largely as soloists using the skills they already have or developing
new skills
Patient activists, having already struggled through a health crisis, struggle with
how to use their experiences to help others with minimal, if any, emotional or
financial support or training
Survey
 Originally proposed interviews with
non-patient activists to try to
understand why someone doesn’t
become a patient activist after a health
crisis
 When proved difficult, instead created
survey on patient engagement and
involvement
 Snowball technique used to distribute
survey link yielding 368 respondents
 20 multiple choice and 2 open-ended
questions
Demographics

Age and gender of respondents
Ethnicity

120
100

80
32% Hispanic, Latino, or Spanish
origin
68% not
60
40
20
0
18-29
30-39
40-49
Male
50-59
60-69
70-79
80+
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Race: 90% were white
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Health status in past year
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Female
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76% had a few or some health issues
Caregiver status
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50% had been caregiver to a family
member with a serious or potentially
serious health condition
50% had not
Patient activism
I am currently a patient
activist
Yes I would like to
I would like to but not
sure if I will get around
to it
I'm not sure
I would not like to but
may have to
No
157
43%
49
42
14%
12%
53
7
15%
2%
54
15%
We consolidated the responses to “Would
you like to become a patient activist?” as:

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Yes N=157
No N=205
Are patient activists different?
 Health status: no health issues in the past year
 4% of patient activists
 22% of non-patient activists
 Caregiver status
 76% of patient activists
 29% of non-patient activists
 1+ ideas to improve healthcare
 98% of patient activists
 77% of non- patient activists
Discussion
1. What is the best term to use?
2. Is everyone a current or future patient activist?
3. Are there disease-based differences?
4. Validate and refine archetypes? Develop a quiz: “Are
you a patient activist?”
5. How do the demographics of patient activism
compare to that of volunteers?
Discussion
6.
What the trajectory of patient activism?
7.
How can patient activists’ stories be heard and used?
8.
Are there health and wellness benefits to patient activism?
Are patient activists activated patients and activators of
other patients?
9.
How can patient activists be better engaged in policy,
research, advisory boards, etc., what skills do they need to
be effective, and can training or a toolkit help them?
10. How can reach and impact be measured?
Recommendations to RWJF
RWJF has a unique and timely opportunity to help nurture,
encourage, support, and amplify the reach and impact of patient
activists who in turn can influence the development and
implementation of public health and health care policy
Recommendations for future directions for this research specific to
RWJF are to:
1.
Identify the best practices of the most effective patient activists
in changing policy and improving the health care system;
2.
Define metrics to measure the reach and impact of patient
activists;
3.
Tap into patient activists for their input into RWJF initiatives; and
4.
Amplify the potential of current and future patient activists
through training and support.