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)

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© Sandi Pniauskas Nov 7, 2006
4
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? ...
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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 decision-

making.”

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 8
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:
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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.

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"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:
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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. 13
21 November 2005 http://www.spiked-online.com/Articles/0000000CAE7D.htm
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
DEVELOPMENT: Carol Kushner and Michael Rachlis, MD 14
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:

→ Lung: 48 % said they have heard of a blood test

for lung cancer, a test that does not exist at this time

→ Breast: 38 % believe they are likely to be diagnosed

with breast cancer. The reality is that an estimated
12 per cent of women ...

→ 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 16
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?”

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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
conference September 2006 18
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.”

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No reference provided to protect the guilty
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 20
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.” 22
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

Refs: 1) Primer on Public Involvement July 2006 ‘Taking the Pulse’ http://www.healthcouncilcanada.ca/en/ 24 ; 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
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Anecdotal Evidence

Scientific Evidence
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But the questions remain:

Are we there yet ?

A: No.

Q:

Fear
Self-reflection
System
How long
Other 28
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

? 30
Informed and proactive cancer patients:

 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

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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
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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
Participation in Phase I Oncology Research 33
DOI: 10.1200/JCO.2006.06.0269
 Conclusion
Use the power of individuals:

• 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

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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