Ovarian Cancer: Let Me In!

Let Me In!

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The Patients’ Voice in Cancer ?

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Principal Author:

Sandi Pniauskas Ovarian Cancer Survivour Patient Advocate

sandipn

sympatico.ca

With thanks to: Pamela J. West RN, MSc, ACNP, CON(C)

© Sandi Pniauskas Nov 7, 2006

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Let Me In! The Patients’ Voice in Cancer ? Abstract Current international philosophy speaks to patient-centered care. Patient-centered care is old news. Fast forward to today. Many industrialized nations are leading efforts to include patients/consumers in decision/policy-making programs. The literature is replete with ‘expert’ analyses, in efforts and in select cases, to include patients (consumers) in decision-making roles. However, the roles, structures, acceptance and basis for patient involvement are being widely debated. The decisions lie with whom? Existing approaches may be old approaches. Who are the experts? ... 5

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The concept of ‘expert’ is key to this dialogue and the definition complex. Who is the Patient? Who is the Consumer? Does the literature accurately reflect the reality of the patient community? Who is the community? Who speaks for the community? Biases? Actions, as opposed to questions, need to be addressed relating to: self-interest(s), rationing of services, power struggles and the impact of micro managing healthcare systems. Ideals include, but are not limited to: skill-sets, decision-making, urgency of cause, the humanities and equality of participation. Who gets what and why?

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This presentation will review the literature, discuss the term ‘expert’ and provide the many missed opportunities. It is anticipated that society and healthcare communities will be challenged to reconsider the multi-faceted roles of patients/consumers and encourage a review of philosophy and practice.

We will provide an opportunity to challenge current ideals. 7

Optimizing Knowledge in the Information Society:

“A society in which the information of those with experiential knowledge is used together with that of scientific and technical experts to inform decisionmaking.” authored by Dominique Foray; www.dauphine.fr/imri/Foray/Dom.html ICSU November 2003 http://www.icsu.org/Gestion/img/ICSU_DOC_DOWNLOAD/45_DD_FILE_english5.pdf http://www.icsu.org/Gestion/img/ICSU_DOC_DOWNLOAD/45_DD_FILE_english5.pdf

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What’s Old: • Patient Preferences • Implementation/Coordination of research efforts • Barriers • Who, What, When, Where • Power

What’s Needed: • Interdependence + Experiential knowledge + Independence • One One • ‘Patient’ Navigators • Equal participation Inequalities of Partnerships • Mentoring • Visibility Issues • Will 9

The Expert Patient: “Health professionals are responding to the more ‘Internet informed’ patient in one or more of three ways: (1) the health professional feels threatened by the information the patient brings and responds defensively by asserting their ‘expert opinion’ (health professional-centred relationship). (2) The health professional and patient collaborate in obtaining and analysing the information (patient-centred relationship). (3) The health professional will guide patients to reliable health information websites (Internet prescription).” Patient Education and Counselling 2006 v63 Issue 1-2 Miriam McMullan , UK Patients using the Internet to obtain health information: How this affects the patient–health professional relationship: 10

From the bottom up: “The activists' efforts wrested control of “authoritative knowledge” that had once been the sole domain of the “experts” with advanced medical training. They used this knowledge to empower “average” people with medical information, promote self help and engage in civil disobedience, which led to changes in healthcare delivery...... The activists' efforts led to other health-based social movements that are currently, or will become, issues for health and social policy analysts in the future.” J Health Soc Policy. 2006;21(3):55-69, School of Social Work, Buffalo, NY Keefe RH, Lane SD, Swarts HJ. 2006 From the bottom up: tracing the impact of four health-based social movements on health and social policies. 11

"Patient-centred healthcare, whereby systems are specifically designed to address the needs and preferences of patients, may be the most cost-effective and appropriate way to improve health outcomes for patients around the world......... Right to participate in decisions at the individual patient level .”

IAPO (International Alliance of Patients’ Organizations) Geneva, Switzerland August 2006 Access, Participation in Healthcare Decision-Making And Policy Impact - What Patients Really Want: 12

The Old Way: “The absurdity of a 'patient-led' NHS

What next: a lunatic-led asylum?” “ I can think of numerous innovations in healthcare over the past 50 years ....... that were introduced on the initiative of medical and nursing staff. The dramatic improvements in standards of primary care over recent decades owe little to patients and less to politicians........ Though it is difficult to think of any useful innovation that has resulted from either political or consumer intervention, numerous useless and wasteful initiatives......”

Author Dr Michael Fitzpatrick December 2005 the British Journal of General Practice. 21 November 2005 http://www.spiked-online.com/Articles/0000000CAE7D.htm

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BUT....... “...The case studies suggest that although one need not have an illness or health condition in order to advocate for better services, those who do have direct experience of the system may be in a better position to judge its quality of service, and in some cases, its quality of

care.....” The Evidence Based Decision-Making Working Group of the National Forum on Health FINAL DRAFT 22 Nov 1996 CIVIC LESSONS: STRATEGIES FOR INCREASING CONSUMER INVOLVEMENT IN HEALTH POLICY 14 DEVELOPMENT: Carol Kushner and Michael Rachlis, MD

WHY? ..“the patient was able to judge hospital service quality, especially in its relational, organizational, and environmental dimensions..... Despite a declared interest in satisfaction surveys, the results remain underused by hospital staff and insufficiently discussed within teams.” Intl J of QualityHealthcare Aug2006

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_ 15

At issue sundry public surveys 2006:

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Lung: 48 % said they have heard of a blood test for lung cancer, a test that does not exist at this time

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Breast: 38 % believe they are likely to be diagnosed with breast cancer. The reality is that an estimated 12 per cent of women ...

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Ovarian: 54% of women who haven’t spoken to their doctor about ovarian cancer don’t think it’s an issue since their doctor never initiated the discussion

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But... According to Forest et al. (2003), these problems have fueled a sense of lassitude and disenchantment within health organizations with regard to public involvement. “Why involve the public since there is a risk of

confrontation and we may not be able to meet their expectations?” In addition, many citizens are frustrated and cynical about their own involvement in past public consultations.”

http://www.healthcouncilcanada.ca/docs/papers/2006/PublicInvolvementPrimer_EN

Many consider that traditional structures to involve the public do not allow them to contribute meaningfully to the decision-making process and, in some instances, the outcome is pre-determined (Abelson and Gauvin, 2004a; O’Hara, 1998).

“Why participate if we don’t have any influence on the decisions?” 17

Progressive Thinking:

“It is intended that partners from the community should attend with their professional colleagues, wherever possible, to ensure collaborative working.”

UBC ‘Where’s the Patients’ Voice in Health Professional Education?” Building a Platform for Change - UK 2006 18 conference September 2006 http://www.healthdisciplines.ubc.ca/DHCC/moodle/mod/resource/view.php?id=43

Who is Invited?

2006:

“This educational program is intended for physicians in active clinical practice, clinical researchers, nurses and healthcare administrators who are interested and/ or involved in the management of cancer. No specialized knowledge or skills other than a general familiarity with cancer and its treatment is required for successful participation in this program.”

No reference provided to protect the guilty

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The New Way: “Patient and community voices are increasingly engaged in professional learning at a range of levels across all disciplines. Their voices aim to influence change in practice and support innovation in the transformations of health and social care currently under way. Bringing in patient and community voices to education and learning in practice gives opportunities for mutual, transformative learning that has the potential to foster truly collaborative working.” UBC: Where’s the Patients Voice in Health Professional Education? 2005 http://www.health-disciplines.ubc.ca/DHCC/moodle/mod/resource/view.php?id=43

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Let me In !!

"Patients or their representatives should

not attend the MCC, to ensure unbiased case review.“

F. Wright, C. De Vito, B. Langer, A. Hunter, and the Expert Panel on the Multidisciplinary Cancer Conference Standards 2006 Cancer Care Ontario Multidisciplinary Cancer Conference Standards A Special Project of the Clinical Programs and the Program in Evidence-based Care, Cancer Care Ontario Developed by the Expert Panel on Multidisciplinary Cancer Conference Standards, Cancer Care Ontario Report Date: June 1, 2006 http://www.cancercare.on.ca/pdf/pebcmccf.pdf 21

2003: “The process of “consensus” model decision-making in settings where there is little balance in representation or power should be abandoned in the interests of improved transparency and accountability for both regulators and consumer or public representatives. While most self-defined public interest or consumer groups recognize the need and responsibility to involve members in policy and position formulation, they often lack the means to effectively consult or inform membership. Consequently, representatives are often in the position of putting forward their personal views or the views of a core group of members. .........These views may or may not reflect the views of their full membership to be informed by a significant body of situational knowledge or relevant research.”

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Action words: “We heard a wide range of disparate views. What pleased me is that real differences in point of view persisted, as they should. The symposium didn’t turn into some kind of ‘consensus-building love-in’. .....specifically the public’s trust in having their voices heard. The issue (GM foods) was arguably the symposium’s most commonly cited example of how the public’s voice is either ignored in Canadian and American policy-making........”

David Castle, Chair: GE3LS Symposium 2004 Synopsis Gives Voice to the Unheard Spring / Summer 2004 Vol. 2 / N° 3 23 http://www.genomecanada.ca/xcorporate/publications/Newsletter_CRA.pdf#search=%22Theatre%20as%20a%20p

CONCLUSION - key messages to help inform the deliberations of the Health Council of Canada about the role and parameters of public involvement:

1) Different levels 2) Public participation - democratic renewal 3) Governance health systems, public involvement - 4 major functions 4) Polls illustrate desire of citizens to participate more actively 5) Different perspectives exist 6) Evaluation should be built into the public program 7) Challenges to public involvement should not be underestimated 8) Form must follow function

24 Refs: 1) Primer on Public Involvement July 2006 ‘Taking the Pulse’ http://www.healthcouncilcanada.ca/en/ ; 2) Julia Abelson et al., Bringing ‘the public’ into health technology assessment and coverage policy decisions: From

Still .... 2006: “Fostering such shared commitment demands that the social locations of all involved be interrogated continuously. Such interrogation, however, needs to be prefaced with understanding that individuals are not representative of particular power positions or social identities or locations and with critical attention to how language and social structures shape racism and other forms of dominance. Being inclusive must be understood as complex and the influence of diverse agendas and perspectives acknowledged and taken into account. In the face of such complexity, "success" in research may need redefinition.”

C. Varcoe, UBC, Vancouver, West J Nurs Res. 2006 Aug;28(5):525-40; Doing participatory action research in a racist world 25 http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16829

Still .... 2006: “Priorities should involve First Nations people but the people don’t bother getting involved anymore – it’s window dressing” (Winnipeg).” “The groups believed that they are not listened to even when they are invited and involved in discussions. What they found to be worse than this is someone else trying to represent them and their point of view...... They also do not want an Ombudsman.”

Kathy Kovacs Burns, Project Researcher et al; The Volunary Hea;tj Sector As Participants In The Public Health System: Defining The Role And Impact 2006 Submission from Best Medicines Coalition/The Arthritis Society of Canada July 2006 http://www.patientsandconsumers.org 26

Anecdotal Evidence

Scientific Evidence 27

But the questions remain:

Are we there yet ? A: No. Q: Fear Self-reflection System How long Other

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Recurring themes continue

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So - the stunning conclusion over much time is ?

Public / Patient education/involvement does not work OR Is it the method (s) OR ?

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Informed and proactive cancer patients:

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seek information from a variety of sources

 value a consultative approach within their own patient communities  seek proactive, interdependent and independent approaches as a response to barriers  believe in a comprehensive and inclusive process (ie welcome healthcare professionals) 

desire to do more – for the benefit of others – altruism 31

Required: Picking the ‘right’ Patients Bi-directional trust Moral and philosophical integrity Purposes: .......Taking it one step further than simply the value of the patients voice: Expedite change – individual/institutional/policy Patient dissemination/comprehension of education resources Issues: When Patients Voices aren’t included : “Nothing for Us, Without Us” Cancer World 2005 Mandatory autonomy Respectful/disrespectful insolence Consensus impedes action 32 Communication breakdown  lawsuits

A take home message: “Patients are aware of many alternatives to phase I studies, but do not seriously consider them. Very few experience pressure from family or researchers to participate in research. Their main goal is to fight their cancer, and almost no adverse effect, including death, would dissuade them from enrolling.”

JCO 2006.09.20 Agrawal et al, Dept of Clinical Biethics, NCI: Patients' Decision-Making Process Regarding 33 Participation in Phase I Oncology Research DOI: 10.1200/JCO.2006.06.0269

Use the power of individuals: Conclusion • Form a personal relationship with patient • Invite the patient to fully participate with you • Recognize competing interests • Let the patients speak for themselves – not through you or by you

• Get political Work through it

Nike – Just Do it34

Acknowledgments Peer Review with thanks: Dianne Kramer Endometrial Stromal Sarcoma Survivour M.A., N.C.C., LMHC USA

Cindy Torres Owens Ovarian cancer Survivour RN, IBCLC VA, USA

Special thanks to: Pamela J. West RN, MSc, ACNP, CON(C) Rouge Valley Healthcare System Scarborough, Ontario, Canada 35

Selected references:

• Optimizing Knowledge in the Information Society ICSU November 2003 http://www.icsu.org/Gestion/img/ICSU_DOC_DOWNLOAD/45_DD_FILE_english5.pd • “Expert patient” – dream or nightmare? BMJ V328 27 March 2005 bmj.com • The Expert Patient - J Patient Education and Counselling 2006 v63 Issue 1-2 Miriam McMullan , UK • The Expert Patient Health Soc Policy. 2006;21(3):55-69, School of Social Work, Buffalo, NY Keefe RH, Lane SD, Swarts HJ • Access, Participation in Healthcare Decision-Making And Policy Impact - What Patients Really Want IAPO (International Alliance of Patients’ Organizations) Geneva, Switzerland August 2006

• Intl J of Quality Healthcare Aug2006 Boyer et al: http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abstr

• C. Varcoe, UBC, Vancouver, West J Nurs Res. 2006 Aug;28(5):525-40; Doing participatory action research in a racist world •http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=Abst 36

Selected references: • Kathy Kovacs Burns, Project Researcher, Greg Owen, Discussion Group Facilitator, Jamie Lamont & Julia Karras, Project Coordinators, Project Advisory Committee: THE VOLUNTARY HEALTH SECTOR AS PARTICIPANTS IN THE PUBLIC HEALTH SYSTEM: DEFINING THE ROLE AND IMPACT 2006 Best Medicines Coalition/The Arthritis Society of Canada July 2006 http://www.patientsandconsumers.org • UBC ‘Where’s the Patients’ Voice in Health Professional Education?” Building a Platform for Change - UK 2006 September http://www.healthdisciplines.ubc.ca/DHCC/moodle/mod/resource/view.php?id=43

• David Castle, Chair: GE3LS Symposium 2004 Synopsis Gives Voice to the Unheard Spring / Summer 2004 Vol. 2 / N° 3 http://www.genomecanada.ca/xcorporate/publications/Newsletter_CRA.pdf#search=%2 • Consumer Representatives: Linking them to Consumers April 2003 Consumers’ Association of Canada (Alberta) http://ecn.ab.ca/consumer/ • ‘Facing the Evidence’ series 1/11 Sept 11/18, 2006: Swan/ Barratt ABC The Health Report Australia http://www.abc.net.au/rn/healthreport/stories/2006/1735075.htm#transcript 37

Selected references: • F. Wright, C. De Vito, B. Langer, A. Hunter, and the Expert Panel on the Multidisciplinary Cancer Conference Standards Program in Evidence-based Care, Cancer Care Ontario Developed by the Expert Panel on Multidisciplinary Cancer Conference Standards, Cancer Care Ontario http://www.cancercare.on.ca/pdf/pebcmccf.pdf • Julia Abelson et al., Bringing ‘the public’ into health technology assessment and coverage policy decisions: From principles to practice, Health Policy (2006), doi:10.1016/j.healthpol.2006.07.009 http://www.elsevier.com • François-Pierre Gauvin/Julia Abelson, Centre for Health Economics and Policy Analysis, McMaster University In collaboration with: Mary Pat MacKinnon and Judy Watling, Canadian Policy Research Networks Inc. http://www.healthcouncilcanada.ca/en/ • Norman Swan/Alex Barratt (senior public health researcher/University of Sydney) “Facing the Evidence” series part 1/11 Sept 11/18, 2005 ABC The Health Report Australia http://www.abc.net.au/rn/healthreport/stories/2006/1735075.htm; http://www.abc.net.au/rn/healthreport/stories/2006/1740986.htm 38