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Using Patient Perspectives to Frame HTAs

SARAH BERGLASPATIENT ENGAGEMENT OFFICER, CADTH

APRIL 2015

Canadian Drug Expert Committee (CDEC) reflects

What is the value of the new drug, as compared to existing options?

Patient important outcomes are included in CADTH’s protocol

Methodology

Patient Input Summary

CADTH Review Protocol

Clinical Trials CDECRecommendation

& Reasons

Repeated x30 sequential CDR reviews

❶ ❷ ❸ ❹

Drug IndicationDificid C. difficile infection

XiaflexDupuytren's contracture

Eliquis Stroke preventionKalydeco Cystic fibrosisEsbriet Pulmonary fibrosisAloxi Chemo nausea

Orencia RASeebri COPDStribild HIVSoliris aHUSBystolic HypertensionHumira Juvenile arthritis

Tecfidera MSSublinox InsomniaAfinitor Tuberous sclerosis

Drug IndicationFycompa Epilepsy

Edarbi HypertensionEdarbyclor Hypertension

Fibristal Uterine fibroidsPicato Actinic keratosisLatuda Schizophrenia

GenotropinGrowth hormone deficiency

Jetrea Vitromacular adhesionSimponi Ulcerative colitisInspra Heart failure

Actemra Juvenile arthritisNeupro Parkinson's diseaseBotox Chronic migraine

Tudorza Genuair COPDGalexos Hepatitis C

Final recommendations published March 2013 – June 2014

Results

Patient Input Summaries

CADTH Review Protocols

119 things that matter to patients

89 / 119included

75%

Clinical Trials

61 / 119included

50%

67 / 119included

56 %

CDECRecommendation

& Reasons

FEAREMBARASSMENT

DEPENDENCY

GUILT

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Involving patients in early stages of the HTA process: a participatory

research projectMarie-Pierre Gagnon,1,2* Bernard Candas,3 Marie Desmartis,1 Marc Rhainds,4 Martin Coulombe,4 Geneviève Asselin,4,5 Daniel La Roche,4 Johanne Gagnon,1,2 France Légaré1,5

1 Quebec University Hospital Research Centre, Québec, Canada 2 Faculty of Nursing, Laval University, Québec, Canada3 National Institute of Public Health, Quebec, Canada.4 HTA Unit, CHU de Québec-Université Laval, Québec, Canada5 Faculty of Medicine, Laval University, Québec, Canada

Acknowledgements

This project is supported through a Knowledge-to-Action grant from the CIHR

We wish to thank all project participants, especially those involved in the prioritization process

We are grateful to Geneviève Asselin,Mylène Tantchou Dipankui, Liette D’Amours and Isabelle Ganache for their support

Background

The selection of HTA topics, which includes identifying and prioritizing HTA questions, is a constant challenge for decision-makers

Patient and public involvement (PPI) in the selection of HTA topics makes it possible to counterbalance the value judgments and preferences brought by variety of stakeholders (e.g. scientists, health professionals)

More likely to be relevant to them and adapted to their needs

Background

The cancer field generates a vast array of questions and issues that encompass the full range of services and health policies, ranging from primary prevention, treatment, and expansive drug provision to palliative care.

Thus PPI in HTA in the cancer field appears particularly relevant.

Objective

To describe and evaluate the process and the results of interventions aiming to involve patient representatives alongside health professionals and managers in the identification and prioritization of HTA topics in the cancer field

Methods

A collaborative study with knowledge users from the HTA Unit of the CHU de Québec and the HTA Roundtable of the Integrated University Health Network of Université Laval

Methods Involvement strategies included

Consultation about potential HTA topics in the cancer field

Consensus meeting to reach agreement on top priorities

Evaluation of the prioritization activity Based on a qualitative approach

• semi-structured interviews (11) and observation of the prioritization meeting

Analysis of prioritized topics• at the end of the meeting vs. before the meeting • according to the categories of stakeholders

Selection process and results

Suggestion of topics

• Email invitation to propose HTA topics sent to 75 clinicians and health managers + 25 community groups

• 30 proposals received from 20 different participants, some of them formulated after consulting other people

Filtering of topics and creation of vignettes

• 17 proposals that did not address the HTA program• Honing of other proposals: 12 HTA questions• Creation of vignettes for these 12 HTA topics

Prioritization exercice

• Pre-meeting survey (13 R)• Consensus meeting (11 participants):

• First prioritization exercise in 2 groups: 4 topics selected• Second exercise in 1 group: 6 topics selected• Final individual exercise: 3 topics emerged

Results – Suggestion of HTA topics 30 proposals received (including 7 from

community groups) 12 HTA topics developed (vignettes) 40% of topics were usable (12/30) 29% of topics suggested by patient

representatives (2/7) were usable

Results – Pre-meeting survey

First priority topic: "What is the best time to refer patients with advanced cancer to the palliative care team and to raise their awareness and the awareness of their family concerning

this approach?"

Two topics in second position:

“Is early nutritional intervention recommended for cancer patients who need to receive chemotherapy and/or radiation therapy?”

“What support interventions should be offered to caregivers of a cancer patient?”

Prioritization meeting: process

Welcoming address and presentation of the study

Briefing session about HTA

Prioritization exercise in two groups:

four topics selected in each group

Prioritization exercise in one group:

six topics selected

Final individual prioritization exercise: use of chips equivalent to the number of topics selected. Participants distributed the chips among

the six topics in such a way as to reflect their relative priority

for them.

Results – HTA priorities emerging from the consensus meeting 

Topics prioritized and individual votes Community group

Nb of votes (% )

Health care professional and manager Nb of votes (%)

Total

Nb of votes (%)

1 What are the benefits of group meetings with an interdisciplinary team in oncology (including a community group representative) as regards providing support for new cancer patients?

16 (53%) 9 (25%) 25 (38%)

2 What are the most effective strategies used to invite people to participate in cancer screening programs?

11 (37%) 11 (31%) 22 (33%)

3 Should teleconsultation be recommended for the preliminary evaluation and follow-up of cancer patients in rural and remote areas?

2 (7%) 12 (33%) 14 (21%)

4 Would offering patients in cancer remission a program to adopt healthy lifestyle habits reduce the risk of recurrence and improve their health and quality of life? And what form should this program take?

1 (3%) 2 (6%) 3 (5%)

5 What are the most effective ways to provide information prior to breast cancer surgical treatment concerning the treatment itself and its effects?

2 (6%) 2 (3%) 0

6 Which distress screening tool should be used for patients with cancer?

0 0 0

Results of interviews

Perceptions of the prioritization processThe diversity of participants (from the healthcare network and the community sphere) and of regions

provided complementary perspectives on patient trajectory and raised awareness of different regional realitiesenabled rich exchanges that allowed participants to gain an overview on the topics to prioritize

But…

Various types of regions made it difficult to select topics relevant to all settings (5/11)

Results of interviews

Perceptions of prioritization process Vignettes

Participants appreciated receiving them 10 days before the meeting to get ready for the meeting

Briefing session about HTA enabled participants, especially participants from

community groups, to learn the basics of HTA provided a better understanding of the whole process,

and the place of this prioritization activity

Consensus method for prioritization allowed everyone to express his or her point of view,

and hear the views of others while not preventing them from maintaining their positions

Results of interviewsPrioritization criteria Criteria varied according to the type of

participant Community group representatives tended to

favour topics related to patient support (emotional, practical, etc.)

Clinicians and managers tended to favour topics linked to their clinical area or their management issuesCriteria were different because, as a manager, I had a certain vision concerning deficiencies, performance, and access, while they [representatives of community groups] were more involved in patient support ... Interview # 2

Results of interviews

Criteria varied according to different regional realities: Participants tended to favour an assessment that

would lead to subsequent actions in a given context and thus have a real impact on patients in their regions (e.g. teleconsultation for remote regions)

Results of interviews

Input of patient organizations Perspectives on the life of patients outside

the hospital and on the support provided by the community and their families

Often represented the voice of vulnerable and isolated patients

Problem of “representativeness” of patients on such a committee = not easy to solve, as noted by one participant

Discussion

This study provides knowledge about the effects of involving various stakeholders in the selection of HTA topics and the impact of these strategies on the selection of HTA topics.

Discussion

Difficulties in recruiting enough participants for the prioritization committees as originally planned

Preparatory activities appreciated and perceived as useful Distribution of vignettes 10 days before the

meeting allowed participants to be well prepared HTA briefing session: a prerequisite for

participating in such an activity

Discussion

Impact of the consensus meeting Allowed participants from diverse sectors and regions

to share their knowledge and experience Provided a better understanding of the topics to

prioritize Feasibility of the follow-up of recommendations =

important criterion influencing priority of HTA topics Input of representatives of community groups

provided perspectives on the life of patients outside the hospital and on the support provided by community and family

could give voice to the most vulnerable patients

Conclusion

Involving patient representatives in early steps of HTA is feasible

Patient representatives and caregivers have different perspectives from managers on topics to prioritize but could reach a consensus

Involving patient representatives in the selection process of HTA topics could modify the topics prioritized

Thank you!

Contact: marie-pierre.gagnon@fsi.ulaval.ca

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What does the evidence say?

Moving Beyond Good Intentions: Experience of a Saskatchewan Patient Family Advisory Council

DISCLOSURES

Relationships with Commercial Interest: NoneGrant/Research Support for initiatives being discussed: NoneSpeaker Bureau/Honoraria or external funding for initiatives being discussed: NoneConsulting fees utilized: NoneMemberships on advisory committees, boards: None

Saskatchewan Cancer Agency: Who We Are The Saskatchewan

Cancer Agency is a provincial healthcare organization serving more than 1.1 million people.

SCA operates prevention and early detection programs, provides safe quality cancer treatment and conducts innovative research.

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Saskatchewan Cancer Agency

We provide chemotherapy and radiation treatment as well as stem cell transplants: 6,413 new patient

appointments in 2013-14 45,083 review patient

appointments 22 allogeneic transplants

and 44 autologous 16 COPS centers located in

10 health regions treating 1713 patients closer to home

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SCA Patient Family Advisory Council

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Patient and Family Advisory CouncilPartnership of Care

We Listen, We CareAt the Saskatchewan Cancer Agency, clients, patients and their families are at the very heart of our work. To ensure we are truly focused on meeting the needs of patients and families, we established the Patient and Family Advisory Council. The Council helps us to blend the voices of patients and families with physicians and staff to provide excellent care and services.

What is Patient and Family - Centred Health CareIt is an approach to planning and delivering health care that recognizes and respects the patient and family as partners in the health care process. It redefines the relationships that traditionally exist in health care. Patient and family – centred care is the kind of care you and a family member will receive at the Saskatchewan Cancer Agency.

It is based on:Respect and dignity: Doctors and nurses listen to patient and family perspectives and choices. Sharing information: Communicating and sharing information with patients and families in ways that are supportive and useful to allow patients to actively participate in their care. Participation: Patients and families are encouraged and supported in participating in care and decision making at the level they choose.Collaboration: Health care leaders work together with patients and families to improve their experience and care.

What does the evidence say?Patient First 2009 That the health system make patient and family

centred care the foundation and principal aim of the Saskatchewan health system, through a broad policy framework to be adopted system-wide.

Developed in collaboration with patients, families, providers and health system leaders, this policy framework should serve as an overarching guide for health care organizations, professional groups and others to make the Patient First philosophy a reality in all work places.

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What does the evidence say?

Person-and Family-Centered Care – Putting the patient and the family at the heart of every decision and empowering them to be genuine partners in their care

Site visit and consultation:

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What does the evidence say:

Cancerview.ca is a knowledge hub and online community that offers trusted, evidence-based content from more than 30 partner organizations in Canada. It also offers a wide array of tools and resources developed by the Partnership.

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Canadian Partnership Against Cancer

Involvement in the beginning

Engagement was about forming as a council learning about who we are as a council.

It was about getting things done and having concrete items to say we have achievements.

Developing trust credibility.

Accomplishments: Wireless internet in

clinics Involvement and

presence in 35 activities, events, committees

Instituted comment boxes

Developed recruitment processes

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Patients as part of the improvement team

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“True” engagement?

Good Intentions: Making assumptions

We assumed that because we espoused PFCC everything would be PFCC and it would be smooth sailing…… What’s the issue?

Who’s not going to get it when patient voice is being expressed through a council?

When a staff member comes to council they will agree with us.

Engagement meant we invited patients and families into the room for discussion.

Staff : we can use acronyms and lingo with our patients and family members.

We are getting along well because we are accomplishing tangible changes that we can see.

Do patients and families have any role in policy changes?

We had representation from patients and families… they were in the room when we talked and didn’t disagree.

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Growing and learning….

As PFAC matured, and we had built trust with each other so we felt comfortable to challenge and question each other.

We asked staff to come as guests to present to us on areas of their expertise.

Staff were unclear on the role of PFAC when it came to change and implementation of ideas.

Some of the challenges were uncomfortable, unpleasant and PFAC was unsure what to do next.

We saw differences in how issues were being discussed, resolved or not resolved as we had worked with the easy stuff and now….

Good intentions?

Magazines and puzzles in waiting room areas

What does the evidence say?

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Tuckman slide

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Dr. Bruce Tuckman - 1965

Evidence from others

We learned from others across Canada and stole shamelessly such as Capital Health, Alberta and Kingston, Ontario.

Conference attendance from our Council members.

Evidence on collaborative work and partnerships CPAC.

Our own PFCC forum in Saskatchewan.

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Moving to engagement, collaboration and partnership Conscious and thoughtful approach to ensure that involvement

and engagement is appropriate and effective for each interaction. For some, increased numbers of patient family members on a group or committee.

Clarification of roles PFAC member: working with leaders to know why patient family member involved: information, advice, decision making, and what does collaboration mean.

Started an annual interview process with our Council one by one and now moving to a more objective interview process with objective third party.

Orientation to events and SCA: phone call and letter about the engagement required.

Mentoring of members. Surveys on engagement from patient perspective so we can

continually improve.

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Continuous Improvement: Taking stock – Interviews with members

Policy stakeholder

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Notification of Policy/procedure review which materially influences

patient experience submitted to PFAC Coordinator for inclusion on

PFAC meeting agenda

Major edits/changes required?

Draft policy/Procedure

included on PFAC meeting package

Content expert for the policy/procedure makes

presentation at PFAC meeting

Time period for review and

feedback

PFAC members send individual feedback to

PFAC Coordinator

PFAC Coordinator & PFAC Chair summarize comments and submit

to content expert

Content expert reviews PFAC comments as well as those from

other SCA stakeholders

PFAC Chair signs Review and Sign

Off sheet on behalf of PFAC

PFAC Policy/Procedure Review Process

Edits made and next draft of document

re-submitted to PFAC for

subsequent review

NOYES

Partnership for Patients and Families

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Success isn’t easy

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New frontiers Patient charter Surveys and interviews Experience Based Design Objective surveys for improvement with PFAC

members SCA strategic plan 2015-20: “How is this plan

informed by the principles of Patient and Family Centered Care, and how are patients, families, and other stakeholders being engaged in the work?”

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Sources of evidence

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PFAC Collaborative

Voice for change

Quantitative Data:

Published research

IHI, Patient First, AOPSS,CPAC,

IPFCC, Cancer Care Ontario. CMA, PRO

Qualitative Data

PFAC comments, Interviews, Feedback,

Surveys, comment boxes, QCC, staff and

physicians Qualitative Data:

Conferences

EBD

Advocacy groups: CCAN, STEM, SSCN

Moving from good intentions

Moving from representation to engagement. Listening for what is not being said. Development of processes for collaborative

work together. Determine a reasonable approach for SCA and

our work together that moves from “ask” and request to collaboration.

Defining collaboration and engagement together and roles of each other as we work forward for engagement.

Leveraging the great work from others.

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We invite you to work WITH us as partners as we shape and improve our

health system through true engagement with patients and families

Saskatchewan Cancer AgencyPatient and Family Advisory Council

Questions and Comments

Susan Bazylewski, Vice President Care Services

Saskatchewan Cancer Agencysusan.bazylewski@saskcancer.ca

Louise Frederick, Chair – Patient & Family Advisory Councilpfac@saskcancer.ca

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