Breast Cancer: How I became a Patient Advocate

In a nutshell: This is part two of my report based on my personal experience with breast cancer.
Part one described how I was diagnosed (although symptomless), treated, and how I tapped into my family, social and internet resources to recover. 
This second blog focuses on my work as a patient advocate and founder of Patient Advocates for Cancer Research & Treatment (PACRT).

Harnessing patient power

Having survived (and dare I self-report) thrived after early stage breast cancer myself, I wanted to give something back to others. I came out of my experience feeling empowered by the process of self-management and recovery – and extremely lucky.

Yet during my involvement with various patient support groups and through contacts, I met many fellow Swiss cancer survivors who did not have as satisfying experiences as I had. I resolved to figure out how I could reciprocate the help I received from others during my own experience by contributing to my fellow patients’ empowerment.

I focused on the areas of my expertise and skills: networking, research, and multistakeholder collaboration. 

Benefits of including patients

The hypothesis is that increasing patient-centricity within the medical-oncological community will:

  • unite stakeholders
  • focus research into areas valued by patients
  • increase productivity on research investment
  • reduce medical costs
  • cut through bureaucracy
  • improve health outcomes and quality of life for patients

Evidence is accumulating from around the world that including expert patient input enhances medicines research and development, translational research, and innovation in clinical practice. Healthcare organizations, regulators, health technology assessment agencies, pharmaceutical companies, and other stakeholders are increasingly seeking patient engagement to inform their activities, services, and product development. (See studies below.)

Networking to learn the systems

Connecting with others and networking is what helped me progress to put my ideas into action. One pivotal event: I attended a world cancer day forum in 2013, where I met the CEO of the Union for International Cancer Control‘s (UICC), Cary Adams, and he put me into contact with a patient advocacy group in Amsterdam called Inspire2Live and one of the Founders, Peter Kapitein, who has become a mentor for me. Something he told me in our first meeting helped prepare me for what was ahead. He said that one has to deal with the fact that «we as patient advocates will sometimes make others uncomfortable and will always not be understood or welcome.»
It is a disruption to the status quo to have patient advocates sitting with the usual decision-makers around the proverbial cancer solutions table.

Seeking validation about my nascent thoughts about patient data pooling and shared decision-making, I first turned to the patient organization that was instrumental in my own recovery, the English Speaking Cancer Association (ESCA). Based in Geneva ESCA provides a plethora of cancer support in English for patients and their carers in Switzerland and caters to the ex-patriot community as well as to any locals who speak English.

The ESCA leadership were very supportive of my ideas of coupling patient power, research and data, but explained that direct advocacy was beyond their scope. ESCA focuses on direct patient support, including information sessions, referrals, support groups, licensed therapists, an extensive library on cancer topics, and classes for patients like yoga, and mindfulness.

Next, as a naturalized Swiss citizen who speaks French conversationally, I approached the local Ligue genevoise contre le cancer who have informative and supportive programs for those who face cancer and their loved ones. At the suisse romandie level and concerning my most personal experience, I connected with patient groups and organizations concerning breast cancer, like SavoirPatient, VivreCommeAvant, Europadonna (a representative in Lausanne), and the Breast Center at Hôpitaux Universitaires de Genève (HUG).

Concurrently, I started networking within the Swiss medical community and institutions to see if there would be any positive reaction from the traditional power holders and decision-makers: physicians and the medical-industrial complex. I learned about and talked with people in many of the organizations which make up the Geneva cancer medical community.

Soon, I was invited to attend or speak at local and international meetings and events such as the European Organization for Research and Treatment of Cancer‘s course on Understanding Cancer for patient advocates, Inspire2Live Netherlands annual congress on cancer patient advocacy, Swiss Clinical Trials Organization (SCTO) forums, Hôpitaux Universitaires de Genève‘s Forum for associations helping patients with cancer, University of Basel Medical School‘s innovative course for second year medical students, patientenorientierte und evidenzbasierte Medizin, European oncology conferences, and similar.

The leadership at the Swiss Clinical Trials Organization (SCTO), physicians at les Hôpitaux Universitaires de Genève (HUG), contacts at the Swiss regulatory authority, Swissmedic, and various other institutions met with me and showed interest and support. Some physicians encourage me to pursue my ideas.

I started believing it was possible to make a difference in Switzerland in bringing the patient perspective into decision-making in the cancer world.

I also become involved with the European Union Patients’ Academy for Therapeutic Innovation (EUPATI) helping to start up the Swiss branch, particularly in suisse romandie. This EU-funded patient-led group is not disease-specific, but strives to empower and educate all patients on the medicines research and development process. I began attending conferences and talking with folks in the both the Swiss and broader medical sphere. Through EUPATI activities I learned about patient organizations of many different diseases and conditions throughout Europe.

These patient groups and resources are my roots to getting to know what various cancer patients experience and care about. I have hopes of conducting patient-led research to better understand patient priorities for cancer research and improvements in clinical practice. This is a recent study that I would like to build upon with Swiss-specific inquiries.

Founding PACRT

In 2015 I established an independent, non-profit, volunteer-run Swiss association called Patient Advocates for Cancer Research & Treatment (PACRT). The mission of PACRT (pronounced: PACK’ ərt) is to introduce the patient perspective into all aspects of decision-making regarding cancer research and improving clinical practice.

 

Logo Patient Advocates for Cancer Research and Treatment (PACRT), Foto: Karin Holm
Helping Hands: Patient Advocates for Cancer Research and Treatment (PACRT), Source: Karin Holm; Design by Line Roby.

The original impetus for creating PACRT was actually a formality.  In order to facilitate participation in various activities, conferences, panels, forums, and speaking engagements, sponsors of these events found it preferable to invite a representative from a non-profit organizational than to invite an individual patient like me.

So, I created an organization under the articles 60-79 of the 210 Swiss federal civil code for non-profit associations, which is fairly easy to do. Part of the requirements is to have a governing body or executive committee and I found five colleagues whose backgrounds and expertise I thought could prove useful and who had the passion and ability to contribute on a voluntary basis.

This committee — that at first seemed like just an organizational necessity to me for forming an association – has ended up being extremely important to me. The executive committee (EC) provided viewpoints outside my own head and helped focus and target our ideas into a shared vision that would fill a niche need in society for patients.

My colleagues have been an invaluable source of diverse and interdisciplinary debate, critique, contacts, and inspiration. The fact that they donate their time to this effort and fit into busy lives and careers makes me very grateful to have their support and teamwork.

Therefore PACRT currently functions on a pro bono and volunteer basis with no external funding. Besides guiding our strategy, PACRT associates attend conferences, lend the patient perspective, provide speakers, sit on panels, serve on advisory committees, and the like. We perform these tasks purely in a voluntary role without seeking compensation in fees, honorariums, or gratuities. We ask our sponsors only to reimburse out-of-pocket charges for conference registration fees, modest travel and accommodation costs. In this way, we remain above any suspicion of even the appearance of undue influence by industry, medical, government, or special interests.

We believe firmly in our ability to represent the patient voice objectively and feel we could never be persuaded to do otherwise. However, perception is key, so we wish to operate beyond critique. This governance and funding model has operated perfectly well in this startup period, but we will need a more sustainable funding strategy if PACRT is to expand in any substantial manner. Plus we know that our time and services are valuable to patients, the cancer medical community, and society-at-large. Perhaps in the future we could find a way to seek grants and funding support from groups who share our patient focus.

First patient representative on a Swiss ethics board

PACRT did achieve a major accomplishment towards its objectives in its first year of existence. At an SCTO forum on General Consent in January 2015, I was the only patient participating on the discussion panel along with esteemed ethicists and physicians. In the audience was Dr. Bernard Hirschel, president of the Geneva Commission Cantonale d’éthique de la recherché (CCER). He approached me during the break and began discussions with me about joining the CCER.

What followed was an eight month vetting process at the cantonal and federal level to become the first patient representative to be appointed by the cantonal conseil d’état to a Swiss ethics commission. Hopefully in the future, including a patient representative will become standard practice among the seven regional Swiss ethics committees. In autumn of 2015 I began serving the three-year term on the Geneva Cantonal Research Ethics Commission and Institutional Review Board (CCER) which has been a huge honor and responsibility.

My professional background in global health and technical collaboration in biomedical sciences gave me a basic knowledge of research and development and background in working with scientists and physicians on medical issues. Yet while serving on the CCER, I try to represent the patient’s position when reviewing each clinical research project to which I have been assigned. These projects can be in any area of research on human subjects: from a new biopharmaceutical oncolytic virus to treat a certain type of cancer, to a nouvel formulation gel of debridement for pariodontal maintenance, to an observational study on immunity duration for an Ebola vaccine candidate.

I make sure I understand the basics of the science and the protocol and simultaneously try to think like a patient in approach. I focus on the informed consent sheet to improve clarity and comprehension for someone considering participation in the research. Sometimes I ask questions or point out issues that the physicians and scientists would ignore, take for granted, or overlook.

I am not afraid to express my opinion because I have been treated with respect and patience by these high level experts in the group. I know that being a patient sitting at the committee makes everyone think more reflectively. Sure, sometimes my suggestions and observations have proven naïve or unimportant, but usually my concerns are taken on board as capable of improving the feasibility of the research and outcomes for the participant.

Recommended reading

When Science Offers Salvation: patient advocacy and ethics, a book by Prof. Rebecca Dresser (2001), became my «humanistic scriptures» as I was exploring the territory of patient advocacy in research. The author, Prof. Dresser, became a long-distance mentor of mine. You may know that biomedical research today has a high public profile, largely because of patient advocacy. Following in the footsteps of HIV/AIDS activists, advocates representing an array of patient groups are now vocal partners in the research enterprise.
Advocates want research practices and policies to be more responsive to the people who must live with the burdens of illness. This book shows how advocates have transformed health research, and the associated challenges. While this book was written in 2001, I think it is still well-advanced in terms of the current state of Swiss acceptance of these concepts and could be useful for anyone in the area of research ethics.

Establishing the Swiss branch of EUPATI

As I mentioned earlier, the spirit of working together with others and learning about patient advocacy motivated me to get involved farther afield beyond cancer. As a founding patient organization member, I participated in the Swiss national liaison team that set up the Swiss branch of the European Patients’ Academy on Therapeutic Innovation (EUPATI) with administrative support by the SCTO in Basel.

EUPATI’s goal is to bring reliable, objective information on the medicines research and development process to patients and their loved ones in language they can understand (this information is general in nature, not cancer- or disease-specific).

The group has since gone on to have a very successful Swiss national launch in Bern in 2016. The French EUPATI and about 17 other countries across Europe are also active. The EUPATI Toolbox is a wonderful resource for patients, physicians, nurses, researchers, and the general public on the medicines research and development process.

EUPATI is run by patient advocates and organizations and the language of the articles and glossary are patient-friendly. Their materials are all governed by Creative Commons so the public is encouraged to use and adapt it at will. The Toolbox is in English, French, German, Italian, Spanish, Polish, Russian (www.eupati.eu). EUPATI has trained two cohorts of 50 patient experts each in 12 month programs about 200 hours worth of internet-based instruction and two weeks of on-site classroom. Its final cohort group was accepting applications in spring 2017, to start in the fall (more info on website).

Karin Holm 2014 at the European Patients’ Academy (EUPATI) workshop in Warsaw | Source: EUPATI
Karin Holm, in 2014 at the European Patients’ Academy (EUPATI) workshop in Warsaw | Source: EUPATI

EUPATI aims to meet the challenges and reflects the changing role of patients. In the past, cancer patients were regarded as «subjects» who had research performed on them. However, now it is seen as desirable to involve patients in designing and planning clinical research studies. Which leads me to my next topic.

The COSS study: Patients included

In June 2015, a colleague in PACRT, who is a registered nurse, attended SCTO’s 2015 symposium on «Clinical / nursing / research – a convergence of two disciplines.» She made contact with researchers from Careum Research, the research institute of the Kalaidos University of Applied Sciences (Department of Health) in Zürich, including Dr. Jörg Haselbeck who was collaborating with Dr. Manuela Eicher to seek funding for a unique first-of-its-kind clinical research project on breast cancer, called the COSS study.

COSS stands for «CO-creating and piloting the effectiveness of an integrated peer-to-peer Self-management program for breast cancer Survivors.»

COSS-Workshop Februar 2017, Referentin vor Folie, Foto: Dr. Ursula Ganz-Blättler
COSS-Workshop, 16.02.17 in Bern, Foto: Dr. Ursula Ganz-Blättler

Cancer incidence and prevalence in Switzerland is increasing and so are the psychosocial care needs of patients and their families.
Patients with cancer and their significant others need to be empowered to take an active part in decision-making processes. They can learn behaviors and skills that will support them dealing with their illness and will improve their quality of life.

Patient engagement has gained importance in cancer research and treatment internationally. The Swiss Federal Council’s health priorities Health2020 emphasizes the need to improve access to care and empower patient.

The Swiss National Strategy Against Cancer also defined the necessity to foster patient expertise and has launched the project «self-efficacy». It aims to develop evidence-based programs and services to improve self-management in cancer patients and their relatives. The COSS study has been nominated by the project group as a reference project in the national cancer strategy to attain this aim and is being funded by the Swiss Cancer Research.

In the UK and U.S – there has been increasingly active patient involvement since the late 1990’s:

• identifying and prioritising research topics
• being part of research advisory groups and steering groups
• undertaking research projects
• reporting and communicating research findings

In Switzerland, such a co-creation of novel interventions with patients as co-leaders of projects had never before been initiated. An innovative element of the COSS study is patient engagement in the research team itself. As a breast cancer survivor, I am involved as a co-investigator of the project.

Co-creation also implies partnership and shared leadership between healthcare professionals. If proven feasible and effective, we aim at implementing this pilot program in patient pathways of ten Swiss breast centers to evaluate its effectiveness.

The program will include skill development with variations adapted by participants in:
  • cancer symptom management (i. e. pain, fatigue)
  • prioritizing and asking for help
  • sleep issues
  • living with uncertainty
  • cancer and changes to body
  • cancer and relationships

Studies in chronic diseases and various cancer groups have shown that by completing such a program patients benefit in the areas of emotional support, coping, self-efficacy (the confidence in one’s ability to successfully engage in or perform a specific behavior or task), decision-making and/or health literacy.

The principle investigators have incorporated patient involvement in all aspects of the study. As a citizen scientist/patient investigator, I was brought in from the draft phase of the study design, to give my input and suggestions. I have been included at every step along the way as we made revisions and refinements to our research proposal.

I find it especially important to think at every junction, about my own experiences and about those collective impressions I have gleaned from others. I draw upon the myriad of friends and women who have had breast cancer with whom I have interacted, listened to in meetings and conferences, and read about in my research. I know each woman’s experience is unique. Everyone is not like me and each person has her own values and preferences. Yet common themes, needs, and gaps become evident.

The patients in the COSS pilot study will be early stage breast cancer survivors like myself. However, I constantly think of my late stage «sisters» who face a different prognosis and set of challenges. I remind myself frequently that approximately one-third of all early stage survivors eventually experience a recurrence of breast cancer. This could occur either in the same or in the other breast (if they still have one or both), or could occur as a metastasis in a different area (most frequently these occur in the liver, bones, lungs, or brain).

The scientific community does not know very concretely which factors prevent or cause recurrence or metastasis.  This is a perpetual issue confronting early stage breast cancer survivors – who are often bombarded with saturation in pink ribbons and celebrations of victory. The pinkness effect can offer a false sense of security when in reality one out of three women who survive an initial breast cancer diagnosis will have another one at a later time.

If we are indeed cognizant of this fact that 33% of us will experience a recurrence, we must each find a way to deal with this uncertainty. Some of us prefer to face it full on, some of us block it from our consciousness, and most of us manage a combination or vacillation between these approaches. There is no one right way to address the potential for relapse. It a very personal choice and we need to respect each woman’s approach.

The development of the COSS program

I am particularly interested in the adaptations that the breast cancer patient leaders will be able to make during the workshops. We are taking the Stanford Cancer Thriving and Surviving and Evivo programs, which have already been shown to be successful for chronic disease and general cancer patients. (See also: Empowerment-Evidence: Stanford model in Europe.) Through an approved licensing agreement, we will tailor-make them to fit Swiss German-speaking women’s needs to recover their quality of life after treatment for early stage breast cancer.

The close collaboration with health care professionals including oncologists, gynecologists, breast cancer nurses, psycho-oncologists will be extremely important, and yet what is most valuable is that the patients are in the driver’s seat, steering the adaptation to their perceived requirements.

COSS-Workshop, 2.2.17, Bern, Frauen vor Flipchart, Foto: Jörg Haslbeck
COSS-Workshop, 16.02.17 in Bern, Foto: Jörg Haslbeck

The patient leaders will be women such as myself, who have been through the diagnosis and treatment and have come out on the other side of recovery wishing to help others through the process. My value-added will be serving as verification or substantiation about the adjustments suggested by the patient leaders to make the six-week program most useful to the women participants. These women face situations unique to breast cancer, such as how to approach changes in upper body image, evaluating options for enhancing physical characteristics, sexuality and fertility issues, and the pervasive pink ribbon imagery.

Will the program provide a pathway for survivors to master their recovery and reinsertion into their social and professional lives? Will it provide a systematic method to help women in a replicable and large scale manner? I consider this a paramount question to provide an evidence-based approach to offer populations compared to my own cobbled-together, instinctual, non-scientific method for my personal recovery (see my first blog).

Can we expect that all women in Switzerland facing breast cancer could gain the self-management skills to reclaim control over their daily lives, hopes, and dreams? I am so glad my compatriots in the future may have a group of women with whom to explore these issues together. From my own experience, I know that facing adversity with others can be much more supportive than facing it on one’s own.

My questions will be addressed to a certain extent through the rigorous measuring questionnaires we will be implementing at intake, end of program and se months after. Whether or not the results from the COSS Study pilot prove our original hypothesis, we will nonetheless gather data and expert opinions from all stakeholders to be able to further fine tune interventions that will empower Swiss women diagnosed with breast cancer.

Swiss German as a linguistic challenge!

An interesting feature of my participation in the pilot COSS Study is that it is taking place in the German-speaking cantons of Switzerland. All of our pilot study materials are focused on the local language – written in Hochdeutsch and spoken in everyone’s respective Swiss-German dialect.

Ich spreche nur ein bisschen Deutsch (= I only speak a little German). I was born and raised in the United States, so my mother tongue is American English. I am a naturalized Swiss citizen, having lived in Geneva, which is in the French-speaking region of Switzerland, for over 19 years. So I speak French now «passably» as a second language. However, due to an earlier stint in Copenhagen, I have fluency in Danish, which has Germanic roots, so this helps my German comprehension. Also I am trying to learn more German in my spare time.

Despite this linguistic challenge, because my co-investigators speak fluent English, we conduct our planning meetings in English. The original Stanford University’s Chronic Disease Self-Management Program (CDSMP) materials are in English and we will be publishing in English. Therefore I am able to fully following all the developments intellectually, if not linguistically.

I manage to gain a general understanding of what transpires during the patient workshops — which have taken place in a combination of German and Swiss-German – due to my familiarity with the subject matter. I think ahead to the possibility of adapting the COSS study, if the pilot is successful, to suisse romandie where my French will make it much more familiar territory.

Tell us your thoughts! Let’s discuss!

  • What do think the role of patients should be in cancer research and improving clinical practice?
  • Do you have additional examples from your countries that could demonstrate progress in patient empowerment?
  • How do you view the obstacles and opportunities for greater engagement by patients in research agenda setting and clinical study design?

Further interesting links

  • My friend and colleague in French-speaking Switzerland, Christine Bienvenu, runs the blog Seinplement Romand(e)s for breast cancer survivors and teaches e-patient skills to patients, hospital personnel, and physicians in Geneva and Lausanne. She translated the book Let Patients Help by e-Patient Dave de Bronckhart (Impliquons les Patients!, in French).
  • The Duchenne Parent Project is an example of patient-directed and funded research to develop new treatments by a group of parents of children with Duchenne muscular dystrophy and Becker. Besides offering patient support this organization promotes and finances scientific research to defeat Muscular Dystrophy Duchenne and funds research projects, scholarships for researchers and the purchase of diagnostic tools. [See also espeRare Foundation]
  • An article by Mitchell, Geissler, et al. Biobanking from the patient perspective, Research Involvement and Engagement (2015) highlights the changing role of patients in biobanks where they are increasingly acting as collaborators in the design, development, and running of biobanks. Patients’ Tumor Bank of Hope (PATH) Foundation, Munich, Germany, is a German non-profit biobank owned and run by breast cancer survivors and intended for the sole purpose of supporting breast cancer research.

Studies

Elg, M., Engström, J., Witell, L., & Poksinska, B. (2012). Co‐Creation and Learning in Health‐Care Service Development. Journal Of Service Management, 23(3), 328-343.
http://dx.doi.org/10.1108/09564231211248435

Esmail, L., Moore, E., & Rein, A. (2015). Evaluating Patient and Stakeholder Engagement in Research: Moving from Theory to Practice. Journal Of Comparative Effectiveness Research, 4(2), 133-145.
http://dx.doi.org/10.2217/cer.14.79

Forsythe, L., Szydlowski, V., Murad, M., Ip, S., Wang, Z., & Elraiyah, T. et al. (2014). A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases. Journal Of General Internal Medicine, 29(S3), 788-800.
http://dx.doi.org/10.1007/s11606-014-2895-9

Sacristan, J., Aguaron, A., Avendaño, C., Garrido, P., Carrion, J., & Gutierrez, A. et al. (2016). Patient Involvement in Clinical Research: Why, When, and How. Patient Preference And Adherence, 631.
http://dx.doi.org/10.2147/ppa.s104259

Yeoman, G., Furlong, P., Seres, M., Binder, H., Chung, H., Garzya, V., & Jones, R. (2017). Defining patient centricity with patients for patients and caregivers: a collaborative endeavour. BMJ Innovations, bmjinnov-2016-000157.
http://dx.doi.org/10.1136/bmjinnov-2016-000157

Karin Holm

Karin Holm is a breast cancer survivor and created the Swiss non-profit association Patient Advocates for Cancer Research and Treatment (PACRT) whose goal is to bring the patient perspective into all aspects of cancer research and treatment by placing informed patient advocates onto cancer-related decision-making bodies.

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