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 Activated patients Volunteerism Leadership Patient activism and patient activists

40 semi-structured interviews with patient activists 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 crisesPatient 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 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

Jim Collins, “Good to Great” Capabilities of leaders who take companies from good to great include

genuine personal humility blended with intense professional will

Discussion 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 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” 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

Motion came from board member and former bridge district director John Moylan, whose grandson, Sean Moylan, jumped off the bridge to his death

Beth Toner, RN, wrote “Filling in the Cracks: The Fight for Mental Health” about her experiences helping her adolescent son with mental health 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 Diane Aronson: “Public testimony was so compelling” Dr. Amy Reed:"Morcellators are a… failure of device safety, of medical self-

regulation and federal regulation” Debra Valverde: "I am waiting to die... I beg you, please stop morcellation”

Discussion 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

Patient activists who are historical figures, celebrities, or in the news, are visible

There is no repository or listing of patient activists 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 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 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

Alicia Staley

Beth Sanders Moore

Bill Tancer

Brad Love

Bradley Moore

Cheryl Jones

Chris Viveiros

Christine Bienvenu

Christy Heitger- Ewing

Crystal Brown-Tatum

David Goldsmith

Diane Aronson

ePatient Dave

Gail Rae-Garwood

Gerald Matczak

Helen Haskell

Jack Barrette

Jessica Toussaint

Jeff Stier

Jessie Gruman

John Moore

Kara DiOrio

Kate Deklerk

Kim Witczak

Kristin Meekhof

Lisa McGiffert

Lucien Engelen

Michael E. Festa

Michael Maren

Pam Ressler

Patrick Kennedy

Paul Levy

Paul Turner

Rebecca Brookes

Regina Holliday

Sammi Gassel

Teresa Sabga

Tom Concannon

Vernon Dutton

Interview questions1. Why did you become a patient activist? Was

there a specific incident or series of incidents?

2. What were the steps you took?

3. Were there barriers such as stigma or privacy at specific points that you had to overcome?

4. What have you done that has the greatest impact?

5. 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 agencies or health-related organizations including the “patient voice”?

9. What advice would you give to patients who are not currently activists?

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?

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 archetypes1. Career Patient Activists: Most vocal and visible,

epitomized by ePatient Dave, turn patient activism into full-time career 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 as too extreme or evangelistic

2. Patient Activists: Similar to Career Patient Activists but do less because of their health, careers, or drive 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

3. Sporadic Patient Activists: Pursue a health issue, dropped not necessarily because success was achieved Strength: clear message and target audience Challenge: being influential for limited time, lack

of passion or drive to sustain

4. Creative Patient Activists: Use creative and artistic skills to express messages Strength: how adeptly they use their creativity to

reach people Challenge: impact can be diluted through

appreciation for artistry instead of content

5. Celebrity Patient Activists: Use their fame to promote a health issue 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 Themes1. 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 Themes4. 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 Themes7. 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 Themes9. Reach and impact: Difficult to measure reach and impact of patient activists

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 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

18-29 30-39 40-49 50-59 60-69 70-79 80+0

20

40

60

80

100

120

Age and gender of respondents

Male Female

Ethnicity 32% Hispanic, Latino, or Spanish

origin 68% not

Race: 90% were white

Health status in past year 76% had a few or some health issues

Caregiver status 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

157 43%

Yes I would like to 49 14%I would like to but not sure if I will get around to it

42 12%

I'm not sure 53 15%I would not like to but may have to

7 2%

No 54 15%

We consolidated the responses to “Would you like to become a patient activist?” as:

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.