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ALBERTA SPOR SUPPORT UNIT

SPOR@Banff 2015 SessionPATIENT ENGAGEMENT PLATFORM Development Working Group Workshop Report (PEPDWoG)

This report has been produced by the Patient Engagement Platform of the Alberta SPOR SUPPORT Unit. Alberta’s Strategy for Patient Oriented Research (SPOR) Support for People and Patient-Oriented Research and Trials (SUPPORT) Unit is a virtual network of services designed to increase the quality and quantity of patient-oriented research conducted in the province. The Alberta SPOR

SUPPORT Unit is jointly funded by Alberta Innovates - Health Solutions and the Canadian Institute of Health Research and draws expertise from its partner organizations. Further information on the Alberta SPOR SUPPORT Unit and its partner organizations can be

found here: www.aihealthsolutions.ca/initiatives-partnerships/spor/

The views and opinions expressed in this report are those of the authors and do not necessarily reflect those of the Alberta SPOR SUPPORT Unit’s funding, or partnering organizations.

Submitted to:

Dr. Virginia Vandall-WalkerAthabasca University

Lead, Patient Engagement Patient Engagement PlatformAlberta Strategy for Patient Oriented Research (SPOR) SUPPORT UnitEmail: Virginia_ABSPOR@athabascau.ca

Prepared by:

Ken Hoffman PartnerONE WORLD INC.

207-2141 Thurston DriveOttawa, ON K1G 6C9Email: khoffman@owi.caPBN:864984836PG 001

With contributions from:

Sandra ReesAssociate DirectorPatient Engagement PlatformAB SPOR SUPPORT Unit&Dr. Virginia Vandall-WalkerAssociate Professor, Athabasca University Lead, Patient Engagement Platform AB SPOR SUPPORT Unit

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ACKNOWLEDGEMENTS

On behalf of the Patient Engagement (PE) Platform of the AB SPOR SUPPORT Unit, I would like to express my sincere appreciation of all the individuals who participated so enthusiastically in this first PE Platform Workshop! All Patients and Health Research, Practice and Policy Stakeholders who committed to involvement in the PE Working Group and who attended and provided their expert input, are to be commended for their efforts that are reflected in this Report. You were and are key to helping inform the further development of the PE Platform.

I’d like to acknowledge as well, all who helped plan, organize, and run the PE Workshop:

• Ken Hoffman, ONE WORLD INC., Workshop Facilitator• Sandra Rees, Associate Director, Patient Engagement Platform, AB SPOR• Diane Larsen, Administrative Assistant, Patient Engagement Platform, AB SPOR• Robyn Laczy, Administrative Assistant, Patient Engagement Platform, AB SPOR• Dr. Kathy Hegadoren, Professor, University of Alberta & Workshop Station Host • Dr. Clare Gibson, Project Manager, AIHS & Workshop Station Host • Dr. Ryan Perry, Director - Programs, AIHS & Workshop Station Host• Kathleen Thurber, Director, Communications, AIHS & Station Recorder• Mel MacGregor, Project Manager, AIHS and SPOR@Banff Session Organizer

The combined efforts of all involved ensured the success of this first PE Platform Workshop. I look forward to engaging with each of you again, as we collectively promote the engagement of patients and their families in the health research process in Alberta.

Sincerely,

Virginia

Virginia Vandall-Walker PhD RNAthabasca UniversityLead, Patient Engagement PlatformAB SPOR SUPPORT Unit

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CONTENTS

EXECUTIVE SUMMARY •6

1.0 INTRODUCTION •7

2.0 FORMAT OF BANFF SESSION •7

3.0 PATIENT ENGAGEMENT DISCUSSION REPORTS •8

3.1 Background and Opening Discussion •8

3.2 Discussion Topics (Carousel Process) •9

3.2.1 Communication/Mobilization •9

3.2.2 Preparation/Competencies for Engagement in Research •12

3.2.3 Preparation/Competencies for Engagement in Governance •14

3.2.4 Engagement Support/Compensation •16

4.0 WHAT WOULD “SUCCESS” LOOK LIKE? •19

5.0 OVERALL THEMES AND OBSERVATIONS •19

6.0 POST SCRIPT •21

6.1 Additional Patient Input Post Workshop •21

6.2 The PEPDWoG Provisional Report, Banff 2015, Day 2 •21

6.3 Patient Interest in Research Form (PIRF) •21

APPENDIX I - Participants in Patient Engagement Workshop •22

APPENDIX II - Agenda for the Patient Engagement Workshop •24

APPENDIX III - The Draft Patient Interest Enrollment Form (Rev 2.) •25

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EXECUTIVE SUMMARY

SPOR@Banff was an event designed to gather early feedback and to help set the direction for the seven platforms that are part of the Alberta SPOR (Strategy for Patient Oriented Research) SUPPORT (Support for Public and Patient Engagement in Research and Trials) Unit. As part of this event, the Patient Engagement (PE) Platform invited 45 individuals, including patients, patient and community engagement researchers (PaCER), researchers, and staff from a variety of organizations including Alberta Health, the Alberta Health Advocate, Alberta Health Services, Alberta Innovates: Health Solutions, and SPOR PE staff.

The planning discussion for the PE Platform Workshop included:

• A presentation and general discussion about the PE Platform;• A discussion of priority issues for moving the Platform forward; and• A description of what “success” would look like for the Platform.

Some of the main issues addressed during the planning discussion were that:

• There is strong interest from patient representatives as well as from researchers who are already committed to this approach, to develop additional PE opportunities. There is also a good base of experiences in Alberta on which to build.

• At its core, the whole process of PE in research is about creating positive, respectful, and collaborative relationships between patients and researchers. PE can be an intensely personal process for patients, and cause researchers apprehension, so an environment of trust needs to be present. There needs to be sufficient time allotted to the engagement process and sufficient attention given to the various facets of relationship-building in order for the engagement to be successful, which has implications for funding amounts and research timelines.

• It is helpful to understand the process of supporting PE in research as a culture change process. Within this context it is very useful to understand the important role of peer leaders (patients and researchers), success stories, and mentors to inspire and support the process.

• PE is about “co-creation”, which can require extra work and take extra time. It is very important that both patients and researchers are able to see – and to articulate – the benefits from the PE approach to research, so that they will feel the effort is worthwhile. Developmental evaluation can be a useful tool since little data exists about the benefits.

• The term “Patient Engagement”, and the expected roles and responsibilities of patients need to be clearly articulated for both patients and researchers. This applies equally to patient participation in a “research” capacity or a “governance” capacity.

• The commitment that patients make to the process of PE, in terms of time and actual expenses, can be considerable and should be compensated. At the very least, actual patient expenses associated with participation should be covered.

• It is important to ensure that PE activities engage not only the populations that can “afford” to spend volunteer time on such an activity, but truly reflects the populations of interest in the research. It will be important to acknowledge and address barriers to participation (e.g., for marginalized groups).

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1.0 INTRODUCTIONSPOR@Banff was an event designed to gather early feedback and to help set the direction for the seven platforms that are part of the Alberta SPOR (Strategy for Patient-Oriented Research) SUPPORT (Support for Public and Patient Engagement in Research and Trials) Unit. As part of this event, the Patient Engagement (PE) Platform brought together 45 individuals to participate in a planning workshop, including 19 patients / family members, 4 patient and community engagement researchers (PaCER patients1), 9 researchers, and 13 staff from a variety of organizations; Alberta Health (AH), the Alberta Health Advocate, Alberta Health Services (AHS), Alberta Innovates: Health Solutions (AIHS), and SPOR staff. Participants in this PE Developmental Working Group (the PEPDWoG) were provided with background information about the overall SPOR initiative and the PE Platform, and feedback was solicited about initial directions for the PE Platform. An additional 6 individuals participated in the overview of the Platform but not in the Workshop.

2.0 FORMAT OF BANFF SESSIONThe SPOR@Banff session brought together participants from all seven Alberta SPOR Platforms from Thursday evening June 11 – Saturday, June 13, 2015. In the opening session on Thursday evening, all of the participants received an official welcome and heard a keynote presentation from Dr. Dale Sanders regarding the pivotal role that data platforms and “warehouses” can play in supporting the kinds of research that SPOR seeks to promote. On Friday morning, June 12, several presenters spoke on the national SPOR initiative and how it was developing in Alberta.

Late Friday morning breakout sessions were held with a focus on each of the seven SPOR platforms; participants were able to choose the breakout group of their choice. The participants in the PE Platform breakout session, which was run as a workshop, included a wide range of stakeholders with an interest in PE in research (see Appendix I). The design of the workshop was intended to provide participants with an opportunity to engage each other in discussions on a few main questions developed by PE Platform staff that would provide guidance for PE Platform development.

The format was highly participatory, and included2:

1. A presentation and general discussion on the PE Platform;

2. Discussion of priority issues for moving the PE Platform forward. This was generated through a Carousel Process where participants moved through four “stations”, each with different discussion topics. Participants were given 15 minutes to discuss 2-4 questions and to provide feedback that was recorded by the station host, before moving to the next

1 Patient Community Engagement Researchers (PaCER patients). Patients who have undertaken a year of training at the University of Calgary, to engage in research in partnership with clinical researchers.2 See Appendix II for Agenda.

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station. After one hour of rotating, participants ended at their original station and worked with the host to summarize the key points that were then presented back to the large group.

3. The workshop wrapped up with the participants providing their thoughts on what they thought “success” for the platform would look like in 5 years. A summary was prepared of the main points from the Carousel discussions.

On Saturday morning there were additional presentations of the provincial initiative, and each of the SPOR Platforms presented the highlights from their workshop discussions of the previous day. There was time for open discussion and questions by participants.

The focus of this report is to provide a summary of the discussions that occurred during the PE platform breakout session workshop.

3.0 PATIENT ENGAGEMENT DISCUSSION REPORTSThe following are some of the highlights from the various discussions:

3.1 Background and Opening DiscussionThe Patient Engagement Platform Lead, Dr. Virginia Vandall-Walker, provided a summary of key concepts underlying the meaningful patient engagement, as well as information about the stakeholder meetings and planning that has been undertaken in the 6 months since her appointment. Some of the key items covered in the presentation included:

• Definitions of “patient”, “patient engagement” (PE), and “patient oriented research”.

• Rationale for PE.

• Range of engagement possibilities - IAP2 Public Participation Spectrum.

• PE possibilities – in governance and in research.

• Impact of PE.

• Overview of the PE Platform.

• Major activities to date.

• Plans for the future:

Ê Patient conference.

Ê Patient/researcher orientation/knowledge modules.

Ê Development of guiding principles and governance documents.

Questions from participants included the following:

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• What is the definition of patient? (Comments that language around this is very important).

• What are the definitions of the following caregiver terms that are often used interchangeably: Primary caregiver, informal caregiver, and a collaborative approach to caregiving?

• Where do patients sit or how are they presented in SPOR? How can we support PE?

• How are patients going to be recruited? How can the project reach out to the populations that are not in the room and not as likely or able to come forward and participate?

• How was SPOR started and why?

• What is the relationship of the PE Platform to the other platforms?

• What is the role of the PE Platform in assuring that the other platforms are starting with patient identified priorities?

3.2 Discussion Topics (Carousel Process)Participants engaged in a Carousel Process so that they all had an opportunity to provide input to each of the discussion topics noted below. The Carousel Process encourages each group to build on the input from previous groups. The following is a summary of the main points raised related to each topic.

3.2.1 Communication/MobilizationThe goal of this station was to get feedback from participants on how to communicate to patients and researchers about PE in research. For example, the PE Platform is developing a website where patients can register their interest in being involved in the research process. How do we get the message out to the public that this website is open and how do we provide information on what they are signing up for? Also, how do we communicate the need to engage patients with researchers?

Questions that were discussed at this station were:

1. Which members of the public should we be trying to reach? How can we reach them? What is the message we want them to hear?

2. Which researchers are we trying to reach? How can we reach them? What is the message we want them to hear?

Summary of discussion:

Which members of the public should we be trying to reach?

• The messaging will depend on the context – what kind of engagement are patients being

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asked to be involved in? As this involvement is very new to most patients, they will need information about why they are being asked to engage, what difference this will make, and what their expected level of commitment will be. Engagement needs to be moved from the abstract to a concrete level.

• Why limit those we are targeting? Involve everyone. People who are passionate about the topic and want to learn more about it are more likely to be engaged.

• Tailoring of the message to the group you are trying to reach is key.

• When selecting patient groups, make sure that we include a wide age range - from youth to older adults - to get different age perspectives. The method of communication should be based on the most effective way to reach each group.

• Ensure that hard-to-reach or marginalized groups are included such as LGBTQ community members, Indigenous peoples, and people with mental health issues.

• Methods of communication are vast and many and all avenues should be explored: local papers, radio, social media, and word-of-mouth,

• Contact may happen through: patient support groups, places where patients normally receive their healthcare (e.g., clinics, family doctors); public health; frontline staff (caregivers); peer recruitment; community groups (such as Big Brother, Big Sister); learning organizations; rec centres and; Legions (military).

• Have patients encourage other patients for peer-to-peer recruitment. This would be especially good with harder-to-reach or more marginalized populations.

• Community representatives may be useful when working with the First Nation / Métis / Inuit populations.

• Consider a matching service to link interested researchers with interested patients - could call it “Plenty of Researchers” (after Plenty of Fish matching-making website).

• Try non-conventional approaches to recruiting, like crowdsourcing.

• Researchers should have done their homework about the community from which they want to recruit patients.

• The key message to patients should be, “you are valued and your view is important”.

Which researchers are we (i.e., stakeholders associated with the PE Platform) trying to reach?

• Clarity around the question is required. What are patients contacting researchers about? Is it to ask to enrol in a study, to share ideas?

• Patients would try to reach, in the first instance, any researcher who is interested and wants to be involved. In the longer term they would aim for any researcher including those not-well informed about PE

• Pioneers in PE, local champions of PE.

• “Someone who can meet me where I am” (language, understanding, philosophy).

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• Open and accountable researchers.

How can we reach researchers?

• Incentive to do it - grants, continuation of funding tied to delivering on Public and Patient Engagement (PPE).

• Government legislation to require PE.

• Through academia/academics, and Alberta Health Services (AHS).

• Case studies that show more authentic research as a result of PE.

• Provide knowledge as to what the engagement looks like.

What message are we telling the researchers?

• Patients are not the “subject” anymore.

• There needs to be a paradigm shift, can the researcher shift with it?

• They need to use appropriate language in discussing projects with patients – no jargon.

• Release their egos. There needs to be blurring of the power boundaries.

• Need to be able to “air their dirty laundry” (i.e., be comfortable with members of the public seeing the activity of the project day-to-day, which may include failures).

• That there is a place for patients to make a difference.

• Researchers should be mindful, reflective, and accountable.

• “It’s my chronic disease and I want to help / direct management”.

• Be aware of your biases.

For both researchers and patients:

• Reciprocity is key in terms of respecting and creating and maintaining trust.

• Understand/be empathetic to vulnerabilities on both sides. Patients may feel vulnerable if not used to an academic setting, but researchers may feel vulnerable too as they may be showing their unfinished product.

• People recruited need to be willing to form relationships.

• Start this process with the early adopters/champions and the rest will follow over time through diffusion of innovation.

• May need to work with each group (patients and researchers) separately at first to ensure their expectations are met before meeting together.

• Mentor people through the process.

• Ensure that patients are in roles that they are interested in and are comfortable with;

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otherwise they may become disappointed.

• Working as partners allow each person to have motivation through realizing autonomy, mastery, and purpose.

3.2.2 Preparation/Competencies for Engagement in ResearchThe goal of this station was to get feedback from participants about what preparation they thought both researchers and patients needed in order to meaningfully engage with each other in research. Should there be orientation/knowledge sessions available for patients and researchers? If yes, what information should be included in these sessions? Should patients and researchers learn together or separately?

Questions discussed at this station were:

1. What type of preparation do patients need in order to participate in health research? How do you deliver this information?

2. What type of preparation do researchers need in order to engage with patients in health research? How do you deliver this information?

3. Should patients and researchers be oriented/taught together or separately or “it depends”?

Summary of discussion:

• Meet patients and researchers where they are:

Ê Use readiness/fit assessment tool to determine what they know and what they want to do and try to facilitate the matching;

Ê Consider that some patients may need help getting to meetings (e.g., older adults) and participating;

Ê Ask each patient what they have determined they need to learn before joining group - (e.g., might want 1:1 meeting to become oriented before joining the group.

Ê Set the stage properly for patients so they know what PE entails and what is expected of them, so they are not disappointed

• Consider using the IAP2 PE spectrum (Inform, Consult, Involve, Collaborate, Empower) to guide preparation needs (i.e., under each of these steps could be a set of skills or competencies required to successfully engage patients, as well as making learning sessions available to address these skills and competencies).

• Consider investing in people: teach/prepare them to move across the IAP2 spectrum towards the right (i.e. Collaborate, Empower).

• Consider step-wise progressions of engagement (i.e., start at the left of IAP2 spectrum and move to right where levels of engagement require increasingly greater commitment and

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skills. Also, consider step-wise increase in the number of research steps that patients are involved in.

• Some specific areas mentioned include: storytelling, the ethics process and its boundaries and limitations, terminology, communication skills, basics/foundations of the research process, address fear/trust concerns, skills for engagement, what is PE, with researchers learning and using these skills also. In the case of storytelling, also have researchers tell their story to help break down barriers and help build trust.

• Patients and researchers need to co-develop terminology that they will use and meet-in-the-middle to do so.

• Patients and researchers need to develop a common understanding about the role of the patient.

• Rules need to be created in terms of information and where it will be shared - this needs to be agreed upon and there needs to be trust. Consider having a consent form.

• Researchers need to ensure that patient’s health care is not impacted by their involvement or non-involvement in the research.

• Researchers need to recognize that patients are not a disease but a person and a stakeholder in the research process.

• Location for meetings should be neutral and accessible where patients feel safe and comfortable. In-person meetings are best, but options for those who cannot attend need to be available.

• Comes down to empathy and respect; the language used matters.

• Researchers need to feed back the impact of patient involvement in a timely manner.

• Consider a group workshop as a first step. Bring everyone together and provide the background on the subject matter and why it is being researched. Discuss the role of the patient and ensure the role is co-determined and clear. Discuss benefits and challenges of this process and get to know one another.

• Consider use of support people like a facilitator and/or a mentor/buddy for patients (e.g., another patient who has been involved longer and/or at a more engaged level).

• Researchers need to be aware of how they advertise and describe the opportunities available for patients, as this will impact the type of patients who respond and want to participate. Consider collaboratively developing these advertisements with patients.

• Consider having a twice-yearly intake of patients (similar to AHS patient/advisory committees). This will help with planning orientations and create overlap of patients involved in projects.

• Consider having a repository of patients, researchers, and funders – as funders may want to fund work in patient-oriented research. It would increase transparency.

• Delivery – in-person is best, but have other options available e.g., Webinars.

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3.2.3 Preparation/Competencies for Engagement in GovernanceAs a continuation from the previous station, the goal of this station was to address engagement at the governance level (i.e., patient representation on steering committees, working groups, etc.). The goal was to get feedback from participants about what preparation they thought both patients and the committee members needed in order to meaningfully engage with each other.

Questions discussed at this station were:

1. What type of preparation do patients need in order to participate in governance activities/committees? How do you deliver this information?

2. What type of preparation do other committee members need in order to engage with patients in governance activities/committees? How do you deliver this information?

3. How many patients should be involved on committees? One or two or in equal number to other participants (i.e., 5 patients, 5 clinicians)?

4. How should patients be appointed to committee/governance work? Voted in by peers? Appointed by someone who knows him or her? Apply and have an interview?

Summary of discussion:

General comment: There was agreement that (with a few exceptions to be detailed later) researchers and patients actually needed similar preparation to participate together in governance, so most of the discussion covered both questions 1 and 2.

Questions 1 and 2: Initial preparation elements:

• Working relationship between patients and researchers needs to be based on mutual respect (especially as it translates to being listened to), and a safe place to share opinions. There is a need to be transparent about decision-making, to be respectful, and to recognize and address power differentials (e.g., by minimizing language barriers such as use of jargon and acronyms in order to “level the playing field”).

• Creating a sense of reciprocity/mutual benefit is important right from the onset

• There needs to be clarity regarding the responsibilities of the committee, what kinds of decisions the group can make, as well as the roles and responsibilities of all members.

• Needs to be clear to all, how the group leader was chosen, and how decisions are/will be made (e.g., consensus, majority).

• Different processes may be needed depending on whether this is a new committee/group, or if patients are coming onto an already established body.

Examples: a) Process for developing the Terms of Reference (a recognition that the ToR must be a dynamic document); b) Developing the group’s goals (are these already set or

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will there be an opportunity for new members to contribute?); c) What are the outcome expectations of governing?; and d) What are the present communication strategies, and do they need to be adapted to allow patients to participate?

• Each member needs to be seen as an individual first. It is important to spend time together to help to develop relationships with other members of the group. From this, they can develop a group identity.

• Overall process of PE in governance should be step-by-step, moving toward changing the culture of the group (progressive approximation towards mutual transformation).

• Need to pay careful attention to the process so that both patients and researchers are ready to work together (e.g., pre-meetings and post-meeting debriefing about what went well and challenges).

• In addition to general readiness, it would be useful to have a liaison person/ mentor to support patients engaging in governance. Some suggested strategies included initial pre-meetings, individual conversations, and connecting peer-to-peer. This advisor should have skills in mediation and facilitation.

Other points:

• Patients should be involved in governance of all SPOR platforms.

• Consideration of technical requirements to participate is needed: (e.g., internet capacity in rural locations, ability to receive large data files to prepare to participate from a distance).

• Patients should have opportunities to be mentored/learn how to take on more senior roles if they wish, such as co-leadership, leadership and ad hoc committee leadership.

Question 3 and 4: How many patients should be involved on committees? One? or two? or in equal number to other participants (i.e. 5 patients, 5 clinicians)? How should they be appointed?

• Patients should be able to define the level of commitment that works for them and the duration of involvement (needs to be a fit between what committees require and what patients can commit to).

• To ensure ongoing peer support, there should be at least 2 patients involved in governance.

• Other considerations about how many is sufficient: the size of the committee, the role of the committee, and the diversity of voices needed.

• Personal relationships, peer-to-peer relationships, and marketing are all needed to help patients become aware of, and involved in, PE at the governance level.

• Multiple strategies possible to operationalize PE in governance: volunteering, agreements, contracts, invitations, targeted calls, asking organizations to choose representatives.

• There are legal and policy issues that might deter specific patient groups from

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participating: e.g., requirement in some organizations that all volunteers undergo a criminal records check – does this requirement make sense for patients participating in these positions?

3.2.4 Engagement Support/CompensationThe goal of this station was to get feedback from participants about what support they think that researchers and patients will need in order to engage successfully, beyond education. Do they need mentorship? Do they need examples of success? Do they need facilitators? Also, there is much controversy about whether to compensate patients for their engagement. Reimbursing patients for their expenses, such as mileage, babysitting, loss of wage, or parking, does not appear to be debated; however, should patients be compensated for their time? If so, how much should they be compensated?

Questions discussed at this station were:

1. What type of supports do patients need to engage with researchers?

2. What type of supports do researchers need to engage meaningfully with patients?

3. Should patients be compensated for their time they spend engaging? If so, how much or how should the amount be determined?

Summary of discussion:

Points raised recognized that some could cross more than one of the identified question categories as outlined below:

Question 1: What supports do patients need to engage with researchers?

• There should be clarity of role and expectations. They should be concrete (not abstract), clear, and focused. Patients need to be kept up-to-date and provided with needed explanations to understand what is going on.

• Consider including a liaison person to act as mentor and to bridge the gap between researchers and patients; someone who can communicate well with both groups and meet patients where they are. This could include engagement of front-line staff, interpreters (e.g., sign language), people who can speak at the levels of both patient and researcher. “Meet people where they are”

• Need to identify all patient groups and not just the “easy” ones. Need to identify the marginalized groups and have the right liaisons in place to engage them.

• Develop repository of patients and researchers to allow “opt-in” of individuals. Can also be used to identify interest areas of patients and researchers so as to facilitate matching.

• May need to consider emotional support for patients (sharing of patient experiences can

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be very painful).

Question 2: What types of supports do researchers need to engage with patients?

• Researchers need to consider ways to create balance in power relationships that occur between researchers and patients. Need to remove “letters behind and before the name” and come together as equals to the discussion. This also goes for collaboration with other researchers involved in Patient-Oriented Research (POR), to reduce barriers.

• Researchers need to understand what outcomes are most important to patients.

• Should be support to help researchers “give up control” and work together with patients to co-develop research questions.

• The knowledge and tools required to support engagement should be ready and available.

• What supports do patients need to do research? Do they have access to SPOR SUPPORT Units for their work? (e.g., the Methods Platform to help design studies for their questions). How can we support patient-driven research?

• Financial support needs to be available to support the bringing together of patients and researchers to develop research questions and approaches. Application development grants would help.

• Peer review processes need to evolve to evaluate POR projects that have evolving methodologies (e.g., POR grant application has the development of the research question as part of the method, which needs to be recognized by grant review panels).

• Researchers need cultural knowledge, where appropriate, to understand how to engage patients where they are. This needs to be authentic, transparent, and real.

• Legislation around data collection and sharing needs to be addressed.

Question 3: Should patients be compensated for their time they spend engaging? If so, how much or how should the amount be determined?

• Compensation should not be the prime motivator for patients to participate, but there should be some recognition of the time and effort they have contributed.

• The time and expectations around PE should be clearly stated at the outset.

• Agreement that Out-of-Pocket expenses such as mileage, babysitting, loss of wage, or parking should definitely be covered. Minimize barriers to participation.

• Supports beyond OOPE (out-of-pocket expenses):

Ê Compensation could be based on level of engagement (e.g., consider different levels on IAP2 framework – could be different levels of compensation associated with different levels of engagement and be built into the research budget).

Ê Consider the various opportunity costs associated with PE and how this should be considered in the compensation. Acknowledge the commitment made by patients

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to participate/volunteer.

Ê Consider per diem vs. honorarium.

Ê Should be meaningful to the patient.

Ê Rules and legislation/regulation (Canadian Revenue Agency) can impact the compensation provided to patients – e.g., patients on benefits are not allowed to earn any income or they risk losing benefits. Consider the avenue of subsistence for compensation to deal with regulation challenges.

• Part of compensation are the skills patients will learn from the process

• Patients are really motivated when the feel like they have been heard and they see results from their engagement.

Other Comments or Discussion Points

• Important to remember that patients are also conducting their own research here in Alberta (e.g., PaCER project in Calgary which is an example of “patient empowerment” on IAP2 scale).

• Be aware of language and messaging as words may mean different things to different people.

• Criminal record check – many organizations have requirements for criminal record checks for any kind of “volunteer” involvement and this could be a barrier to some populations/people from participating. Also, in some groups (e.g., users of illegal drugs) most of the population is likely to have a criminal record. A criminal record should not prevent/preclude inclusions and PE Platform should consider providing guidance/initiating the discussion around this area.

• For patients who have displayed interest in engaging but are currently working on another research project - consider keeping in touch with this group with monthly or quarterly correspondence to keep them engaged.

• Inclusive engagement - how do we help marginalized populations to be ready to engage? We will need to address things that are very specific to their situations.

• Consider process such as AHS uses for patient advisor intake and training - intake is done at two points in the year and commitment overlaps these dates so patients are always available to participate on committees, and patients in the system can mentor new patients.

• Compensation - need to understand proposals for PE in SPOR could have policy implications for other organizations in Alberta; SPOR needs to go forward informed before decisions are made, but not to be hampered by previous practices.

• National Health Service in the UK has global budget from which patients are paid regardless of what their role with the organization is. This prevents charities from having to compensate patients and bypass rules that prevent compensation.

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• PE Platform staff members were challenged to investigate the problems associated with compensating people for their time who are on a fixed income, and to champion a change in whatever policies exist at this point in time.

4.0 WHAT WOULD “SUCCESS” LOOK LIKE?Participants were asked what they think success would look like in 5 years if the PE Platform were able to do its job and make change happen. They identified the following points:

• Patients in communities would start to see the direct results of their participation. Participants mentioned the following examples:

Ê Continuity of care would be improved everywhere in the province, in both rural or urban settings, through using common databases;

Ê Research is supporting action that results in better patient care.• Studies are implemented that address patient-identified priorities in all platforms;

• Patients lead or co-lead the PE Platform;

• Patient advisors are giving presentations and are in leadership positions;

• Researchers will be bragging about their successes with PE and how PE has moved them forward;

• See a broad range of examples of research projects and activities and how PE is adding value;

• Compensation framework has been developed based on principles of social justice;

• More patients and more researchers are actively engaged and are celebrating together.

Feelings Expressed At the end of the session, participants were asked to share their feelings at this point in the process. Comments included: hopeful, engaged, encouraged, and that we were getting on the right track. One of the participants volunteered to co-present the findings with Dr. Virginia Vandall-Walker to the SPOR @ Banff participants the next day. All were in favour.

5.0 OVERALL THEMES AND OBSERVATIONSThe following were identified as overall themes of the discussion that were presented back to the large group on Saturday morning:

• This will take time – funding envelopes don’t recognize the extra time required to engage patients even at the proposal submissions stage;

• It’s about creating partnerships – this also takes time and effort;

• True spirit of engagement needs to be remembered and embraced. How can we create

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the conditions for this to occur?

Ê It’s about getting to know one another;

Ê Think about engagement as process of developing a relationship over time, and investing in that relationship, rather than as a short-term task;

Ê Need respect, reciprocity, being valued, comfort, trust, listening.• Co-learning, co-creating, co-orientation;

• Building bridges.

Additional observations (from Facilitator):

There appears to be a very strong interest from patient representatives to find additional engagement opportunities, and there are some researchers who are already committed to engaging with patients. This is a strong base on which to build.

It will be very important to develop and share a few successful examples of PE in research in order to build momentum, share lessons learned, and to get researchers and patients talking with their peers.

There should be examples from both the governance and the research side. Given limited resources and time for this initiative it will be most effective to work strategically and in a focussed way to grow it.

Patients really want to see visible impact from their engagement. Knowledge mobilization from some previous/existing projects that have used PE might be a useful place to start.

As stated above, the whole process of PE is about building effective, trusting relationships between patients and researchers, so there needs to be sufficient time and attention to the process of building those relationships.

From some of the discussion it seems to be implied that, in PE in research work, we should always be trying to work towards moving as far to the right side of the IAP2 spectrum as possible, that this is somehow “better” PE. The points on the IAP2 spectrum are not intended to imply that one level is somehow “better” than another. Full patient empowerment will not (and should not) be the ultimate goal of every research project. Where the spectrum is useful is clarifying what each of the levels means in practice, and what the commitment to engaging patients in research means at each level. It would be useful for groups leading research projects to discuss with patients which level of engagement is appropriate for that project, and then follow through on that commitment. It is also really useful for patients participating to know what level of engagement is appropriate so that false expectations are not created.

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6.0 POST SCRIPT

6.1 Additional Patient Input Post Workshop

Following the workshop, several of the participants met to provide input to Dr. Vandall-Walker for inclusion in the short wrap-up presentation for Saturday morning to convey the main points from the discussion to the rest of the SPOR@Banff participants. This resulted in the inclusion of a YouTube about the importance of researchers really listening to patients

www.youtube.com:watch%3Fv=-4EDhdAHrOg

6.2 The PEPDWoG Provisional Report, Banff 2015, Day 2

Debbie Jackman, Patient Advisor, Cardiovascular Heart and Stroke Strategic Clinical Network co-presented with Virginia Vandall-Walker, PE Platform Lead, the PEPDWoG Preliminary Report on Day 2 of the Banff 2015 Session to all Session attendees.

6.3 Patient/Family Interest in Research Form (PIRF)

Although not a component of the actual Workshop conducted by OWI, a draft Patient/ Family Interest Form (PIRF) was distributed to PEPDWoG participants at the Banff Session. Virginia Vandall-Walker requested that participants include written feedback on the draft PIRF by the end of the Session.

This draft form was developed by PEP staff in preparation for including the final version on the AIHS Research Alberta website as a mechanism for interested patients, family members, and caregivers to indicate their interest in engaging with Alberta researchers across the spectrum of the research process.

The feedback was collated and reviewed by PEP staff and informed the PIFR (Revised Draft #1), developed by V. Vandall-Walker which is included at the end of this Report as Appendix III

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APPENDIX I - PARTICIPANTS IN THE PATIENT ENGAGEMENT WORKSHOP CAROUSEL PROCESS

For the Carousel Process to be effective it was important to get a range of opinions from patient, family member, esearcher, and health organization stakeholders. As such, individuals from each of these groups were invited to attend Banff2015 session. Before lunch, an overview of the platform and process was provided. Following lunch, some participants moved to other Platform breakout sessions. The list below includes only those who attended the PE Platform Workshop. While all PEPDWoG Workshop participants wore more than one hat, they were asked to identify their principle representation.

“Patients” attending came from rural, reserve, urban, Northern, Central, and Southern Alberta and were either, PaCERs, Patient Advocates, or the Alberta Health Advocate. “Researchers” attending were from the the Universities of Alberta, Calgary, Lethbridge, Texas, and Athabasca University. Organizations represented were Alberta Health (AH), Alberta Health Service (AHS), the Bissell Centre, the Alberta Cancer Foundation, and Alberta Innovates-Health Solutions (AIHS). We encouraged open discussion in which all attendee opinions held equal value. Specifics about illnesses, designations and titles, were not important to the discussion but rather individuals’ experiences. We would like to acknowledge all participants’ substantial contribution.

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STAKEHOLDERS

# Patient / Family Members Researchers Organizational Reps PE Platform Staff

1 Birdsell, Judy Guirguis, Lisa **Gibson, Clare ***Hoffman, Ken

2 Boudreau, Allison Harasym, Patricia Kovacs Burns, Katharina *Laczy, Robyn

3 Boudreau, Raymond **Hegadoren, Kathy Lamb, Jessica ** Rees, Sandra

4 Davis, Roberta Johnston, Megan Lechelt, Leah Vandall-Walker, Virginia

5 Fulton, Cori Rogers, Laura ** Perry, Ryan

6 Gill, Marilyn: PaCER 3 Romyn, Donna Pringle, Paul

7 Jackman, Debbie Sedgwick, Monique *Thurber, Kathleen

8 Larsen, Diane Wagoner, Christine Trew, Michael

9 Leighton, Jean: PaCER Zikos, Dimitrios Wasylak, Tracy

10 Leiren, Lona Wickson, Patty

11 MacKean, Gail

12 Marshall, Mary

13 McCarron, Tamara: PaCER

15 Miller, Jean: PaCER

16 Pringle, Paul

17 Prowse, Deborah: AH PA

18 Sahlin, Brenda

19 Sanders, Hugh

20 Smith, Jean

LEGEND: *** Facilitator ** Station Hosts * Recorders22 AHS Pt.Advisor

23 Witholt, Shirley: Pt.Advisor

3 Patient Community Engagement Researchers (PaCER patients). Patients who have undertaken a year of training at the University of Calgary, to engage in research in partnership with clinical researchers.

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APPENDIX II - AGENDA FOR THE PATIENT ENGAGEMENT WORKSHOP

Friday June 12, 2015

Time Item

11:15 – 11:25 Welcome and introductions

11:25 – 11:45

Participants’ “Check-In” session

• What is standing out for them from this meeting so far?

• What is one question they have at this time?

11:45 – 12:15

Introduction to the PE Platform

• Presentation (Dr. Virginia Vandall-Walker)

• Questions/discussion

12:15 – 1:15 Lunch

1:15 – 3:00

Carousel discussion process:

1. Communications and mobilization

2. Preparation/Competencies for engaging in research

3. Preparation/Competencies for engaging in governance

4. Engagement Support and Compensation

3:15 – 3:50 Reporting Back on Carousel discussions

3:50 – 4:50

What would success look like?

• Individual reflection

• Small group discussion

• Large group discussion

4:50 – 5:00 Reflections on the day

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APPENDIX III - PATIENT / FAMILY MEMBER INTEREST IN RESEARCH FORM (PIRF)

PART 1: Patient Interest in Research Form (PIRF) Rev.#1

1. Contact information:

¾ Name: ____________________________________________________________ ¾ Mailing Address & Postal Code: ________________________________________ ¾ Preferred phone number (s): cell, landline or both: _________________________

2. Preferred email address: ___________________________________________________

3. Preferred Official Language of participation/correspondence

� English

� French4. Other languages spoken (List)

_______________________________________________________________________ _______________________________________________________________________

5. Ethnicity/Culture you identify with. List all that apply.

(some research topics may target specific ethnic or cultural groups. Self-identifying a culture(s) could result in you being contacted to be involved with these targeted studies)

_______________________________________________________________________ _______________________________________________________________________

6. Education (general comment about education to date):

_______________________________________________________________________ 7. Previous experience with research (check all that apply):

� in courses in school � as a participant or subject � as a researcher � None � Other (specify below)

_______________________________________________________________________

8. How did you learn about SPOR and about becoming involved in research

_______________________________________________________________________ _______________________________________________________________________9. May we contact you to discuss further your specific interests in research involvement?

� Yes

� No

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Involvement in Research

1. How much can you commit to involvement with research? Please check all that apply.

� Short term - < 1 year � Long term - > 1 year � A meeting once a month � Weekly meetings � Evenings only - times � Days only - times � Weekends only - times � On my days off � During my workday - times � I am flexible � Unsure at this time. Contact me later. � Other

_______________________________________________________________________

2. I am interested in being involved in the following ways (check all that apply)

� Patient/ family member/caregiver storytelling – sharing my experience � Completing on-line, written, or phone surveys � Participating in processes to gather patient’s input on areas of care that require more research � Reviewing study designs and providing feedback � Reviewing patient education materials, documents or brochures and providing feedback � As a member of a focus or discussion group about patient engagement in research � As a member of a working group about patient engagement in research � As a member of an advisory or steering committee about patient engagement in research � As a patent member of the research team � Where I can be of best help � In any capacity � Other:

_______________________________________________________________________

3. Please list the areas that interest you or are relevant to you. Check all that apply

� Medical (Specify) ____________________________ � Nursing � Pharmacy � Physio � Rehab � Community health � etc.... list to be expanded at a later date � Other

_______________________________________________________________________

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Diversity

4. We hope to encourage Albertans from a range of ethnicities, cultures, and regions to engage in research so that the diversity of citizens in Alberta is represented. What perspectives can you share?

_______________________________________________________________________

_______________________________________________________________________

5. Is there anything else you would like us to know about you?

_______________________________________________________________________

_______________________________________________________________________

Possible Conflict of Interest

6. Do you or any organization you work or volunteer for, have any competing interests that could be seen to influence your participation?

� � Not Applicable � Yes � No � I don’t know - Explain below if you wish.

_______________________________________________________________________

Staying in Touch

7. Do we have your permission to contact you regarding different opportunities for participation?

� Yes � No � Other - specify

_______________________________________________________________________

8. Would you like to be kept informed by receiving information and updates by email or newsletter?

� Yes � No � Other - specify

_______________________________________________________________________

** Please note that should you no longer want to be involved you can contact us by email or phone to have your information removed from our database;

c/o Robyn Laczy, Administrative Assistant, Patient Engagement Platform, AB SPOR Support Unit

Email: rlaczy@athabascau.ca Telephone: (780) 492-1481

* If you have any questions, please contact Robyn Laczy (see above contact information).

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