The Untapped Potential of Patient Activists

1. The Untapped Potential of Patient Activists Lisa Gualtieri, PhD, ScM Lisa.Gualtieri@tufts.edu @lisagualtieri July 17, 2014

2. Acknowledgements • Thanks to • Christine Nieves for her inspiration and support • Beth Toner for her early support • Many patient activists who gave their time

3. In memoriam • Jessie Gruman, who died on Monday

4. Three key questions • Who are patient activists? • What motivates patient activists? • How do patient activists work?

5. 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

6. Definition of patient activists Patient activists are people who leverage their personal health experiences to try to improve healthcare or other peoples’ health

7. Terminology • Patient or healthcare consumer? • Patient activist or • Patient advocate • Patient navigator • Health activist • “Loud mouth patients” • And more

8. 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?

9. 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?

10. 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?

11. 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

12. 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

13. 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?

14. Are these celebrities patient activists?

15. 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 • Walter White, diagnosed with Stage III lung cancer in “Breaking Bad” and worried about his family’s finances, decided to manufacture and sell methamphetamine • Jennifer Hudson educated people about weight loss, but did so as a Weight Watchers ambassador

16. 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

17. Who is NOT a patient activist?

18. 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

19. 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”

20. 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

21. 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

22. 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

23. Interview questions • Why did you become a patient activist? Was there a specific incident or series of incidents? • What were the steps you took? • Were there barriers such as stigma or privacy at specific points that you had to overcome? • 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? • What are the primary sources of satisfaction you experience related to your activism? • What are the primary difficulties or frustrations you experience related to your activism? • 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”? • What advice would you give to patients who are not currently activists? • What do you believe organizations could do to engage non-activists to provide feedback on and promote healthcare innovations? • What could organizations do to more effectively promote initiatives to patients? • 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? • Finally, can you recommend other people to interview, either activists or non-activists?

24. 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

25. Patient activist archetypes • 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 • 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 • Sporadic PatientActivists: 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 • Creative PatientActivists: 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 • Celebrity PatientActivists: 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

26. 10 Themes • 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 • 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 • 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

27. 10 Themes • 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.” • 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 • 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

28. 10 Themes • Series of health incidents: For some patient activists, multiple health events led to their patient activism, which may include their own and loved ones • 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

29. 10 Themes • 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 • 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

30. 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

31. Demographics • 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

32. Patient activism • We consolidated the responses to “Would you like to become a patient activist?” as: • Yes N=157 • No N=205

33. 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

34. Discussion • What is the best term to use? • Is everyone a current or future patient activist? • Are there disease-based differences? • Validate and refine archetypes? Develop a quiz: “Are you a patient activist?” • How do the demographics of patient activism compare to that of volunteers?

35. Discussion • What the trajectory of patient activism? • How can patient activists’ stories be heard and used? • Are there health and wellness benefits to patient activism? Are patient activists activated patients and activators of other patients? • 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? • How can reach and impact be measured?

36. 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: • Identify the best practices of the most effective patient activists in changing policy and improving the health care system; • Define metrics to measure the reach and impact of patient activists; • Tap into patient activists for their input into RWJF initiatives; and • Amplify the potential of current and future patient activists through training and support.