3 February 2014 WELCOME. Objectives Provide updates on government relations advocacy Provide a forum...

3 February 2014

WELCOME

Objectives•Provide updates on government relations advocacy •Provide a forum for updates for consumer engagement by the Rick Hansen Institute•Provide information regarding research collaboration initiatives

INTRODUCTIONS

• UPDATE: Post Pressure Sore Rehab & Performance Based Funding Model• Hamilton Health Sciences• University Health Network

• UPDATE: Assistive Devices Program

• UPDATE: Catastrophic Impairment Definition

• UPDATE: Public Policy Website

BUSINESS ARISING FROM MINUTES

UPDATE:Post Pressure Sore Rehab &

Performance Based Funding Model

Hamilton Health SciencesUniversity Health Network

UPDATE:Assistive Devices Program

Assistive Devices Program

Please find a discussion document on possible approaches to address challenges with the Assistive Devices Program:

http://alliance.sciontario.org/sites/alliance.sciontario.org/files/attachments/ADP%20Discussion%20Document.pdf

•Are we addressing the right issues?

•Are we taking the right approach?

•What other aspects should we consider?

UPDATE:Catastrophic Impairment

Definition

UPDATE:Public Policy Website

www.sciontario.org/publicpolicy

• Our website allows us to share news, backgrounders and documents – this gives visibility to our issues

• For campaigns, people may write pre-scripted letters to decision makers by inputting their postal code – this increases the likelihood of participation and campaign success.

• People may receive customized updates on issues that are important to them – this enables us to build a responsive constituency.

Public Policy Website


http://alliance.sciontario.org/node/143

A private – or “back end” – of the website is under development – this will host Alliance minutes and documents that any member can access at any time


UPDATE:ATTENDANT SERVICES

• BREAKTHROUGH: On January 20th – while the SCI Ontario-Personal Injury Alliance Public Policy Summit was taking place – the Minister of Health and Long-Term Care announced, in addition to the $5 million increase for Direct Funding this year, a planned $5 million increase over the next three years.

• Some Local Health Integration Networks – such as Champlain (Ottawa), South West (London) and Toronto Central – have announced substantial investments in Outreach attendant services. Some LHINs have yet to make such investments in Outreach.

• From the government, the focus thus far has been mainly Direct Funding; there has been some focus on Outreach.

• Access to all services remain a challenge, including supportive housing/Assisted Living.

UPDATE: Attendant Services

• SCI Ontario has participated in the pre-budget consultations, including presenting to the Standing Committee on Finance and Economic Affairs.

• We have asked the government to expand on momentum to date, and to address existing waitlists for Outreach. We have asked the Ministry to mandate the LHINs across the province to do so

http://alliance.sciontario.org/sites/alliance.sciontario.org/files/attachments/SCI%20Ontario%20Written%20Submission%20-%202014%20Pre-Budget%20Consultation.pdf

• As we did during the August 2013 by-elections, an all-party survey has gone out to candidates in the current by-elections in Niagara Falls and Thornhill to have the successful candidates’ views on record.


• The SCI Ontario – Personal Injury Alliance Public Policy Summit was a success, with 410 people registered in person and online.

• His Honour, David C. Onley, Lieutenant Governor of Ontario, gave the keynote address.

• Challenges – and opportunities – with publicly-funded and Motor-Vehicle Accident benefit-funded attendant services were identified.

• A draft Report of Findings has been completed.


Evaluation highlights

•90 percent approval rating (4s and 5s on a scale of 1 to 5 for the Summit overall)•Many participants appreciated the wide range of issues addressed and expertise offered•Many participants would like to see a stronger focus on actual solutions

•KEY TAKEAWAY: Better coordination of services is needed; they should be consumer focused, and aligned with the Independent Living philosophy.•25 percent of evaluation respondents use attendant services

•Wide range of participants from across the province, with large segments coming from Toronto and Ottawa respectively

What lessons have we learned?


FOR CONSIDERATION:A cost-benefit analysis of the existing $5 million expansion of Direct Funding.


UPDATE: ALLIANCE SUSTAINABILITY

• Ontario Neurotrauma Foundation

• Ontario Spinal Cord Injury Solutions Alliance

• Ontario Quality of Life / Rick Hansen Institute

Provincial Ask Funding

PRESENTATION 1:Primary Care:

Case Reports – HNHB Family Health Team

Access to Primary Care for Persons with Spinal Cord Injury: A Health Service Delivery Study

Richardson, J., MacRae, L., Wojkowski, S., Moore, A., Oliver, D., Price, D., LeBlanc, K., Czajka, T., Draaistra, H., Sinclair, S., Athanasopoulos, P.

January 2014

Potential Participantsn=63

Recruitment •Inpatients from acute care, RRC at HHS•Outpatients from RRC at HHS•Collaboration with SCI-O (Meetings, electronic newsletter, advertisement on web page, attended various support groups).•MacWheelers

Patients consenting to participate

n=35

Patients currently enrolled in the

projectn=33

Dropped out (n = 2)

Excluded•Not interested (n = 9)•Physician declined to participate (n = 9)•Hospitalized/unwell (n = 3)•Unable to contact (n = 2)•Not SCI (n = 2)•Out of area (n = 1)•Awaiting GP consent (n = 1)•Deceased (n=1)

Patients completing their 9 month F/U

n=15

Timing of Assessments

Baseline 9 Months Follow-UpPrimary Care ChecklistDevelop action plan

Review of action plan Review of action plan

Written consent

Data collection Data Collection Data Collection

n=35 n=15

Patient Participants

Participant Characteristicsn=33 Range

Mean age 53 (15) 21 - 77

Gender FemaleMale

25 (74%)9 (26%)

Marital Status Single MarriedSeparated/DivorcedWidowed

4 (12%)24 (71%)

2 (5%)4 (12%)

Lives * AloneWith familyAssisted living

7 (21%)25 (74%)

2 (5%)

* For participants assessed in hospital, response reflects pre-injury living arrangement.

Participant Characteristics (cont.)

n=33

Employment status* Works F/TWorks P/TUnemployedRetired

6 (18%)3 (9%)

12 (35%)13 (38%)

Education ElementaryHigh SchoolCollegeUniversity

1 (3%)11(32%)15 (44%)7 (21%)

* For participants assessed in hospital, response reflects pre-injury employment status.

Participant Characteristics (cont.)n=33 Range

Time since injury (years) 8.1 (12.4) 0.1 - 42

Details of SCI TraumaticNon-traumatic

17 (50%)17 (50%)

TetraplegicParaplegic

17 (50%)17 (50%)

CompleteIncomplete

5 (15%)29 (85%)

Mobility Power chairManual chairAmbulatory

12 (35%)14 (41%)8 (24%)

Outcome MeasureBaseline

Mean (SD)(n=34)

9 MonthMean (SD)

(n=15)

Secondary Conditions Scale 17.48 (7.97) 13.46 (7.34)Scores 0-48. Higher score reflects greater impact of secondary conditions.

Health Behaviour Questionnaire 74.82 (9.99) 67.33 (8.66)

Score 0-66. Higher score reflects greater performance of health behaviours.

World Health Organization Quality of Life Questionnaire ( WHOQOL-Bref)Overall QOL 3.55 (1.35) 3.87 (0.99) Score 1-5Satisfaction with Health 3.06 (1.20) 3.27 (1.22) Score 1-5QOL – Physical Health 12.19 (3.06) 13.18 (2.94) Max score 100

Higher score reflects greater QOL.

QOL – Psychological 13.70 (3.17) 14.62 (3.33)QOL – Social 13.70 (3.55) 14.29 (3.16)QOL – Environmental 14.76 (3.28) 16.77 (2.08)QOL – Total 54.34 (11.14) 58.67 (9.16)

Baseline Scores for Selected Outcome Measures


Mean (SD)(n=34)

9 MonthMean (SD)

(n=15)

Self-Efficacy to Perform Self-Management Behaviours Questionnaire

Exercise regularly 7.54 (2.29) 7.91 (1.97) Score 1-10Higher score reflects greater self-efficacy.

Get information about disease 7.09 (1.74) 8.53 (1.73)Obtain help 7.33 (1.99) 7.80 (1.43)

Communicate with physician 8.25 (2.07) 8.53 (2.48)Manage disease in general 7.16 (1.74) 7.88 (1.97)

Do chores 5.01 (2.81) 5.78 (3.11)Social/recreational activities 4.86 (2.43) 5.57 (2.72)

Manage symptoms 5.68 (2.26) 6.96 (2.21)Manage SOB 8.15 (2.06) 8 (2.75)

Control/manage depression 6.54 (2.04) 8.07 (1.19)



Mean (SD)(n=34)

9 MonthMean (SD)

(n=15)

Patient Assessment of Care for Chronic Conditions (PACIC)Patient Activation 3.60 (1.31) 3.51 (1.57) Score 1-5

Higher score reflects better SM supports.

Decision Support 3.21 (1.26) 2.82 (1.21)Goal Setting 2.66 (1.21) 2.23 (1.24)Problem Solving 3.10 (1.48) 2.63 (1.36)Follow-Up 2.71 (1.22) 2.51 (1.26)Overall 2.99 (1.19) 2.66 (1.11)

Patient Satisfaction Questionnaire (PSQ-18)General Satisfaction 3.57 (1.18) 3.77 (1.45) Score 1-5

High score reflects satisfaction with medical care.

Technical Quality 3.56 (1.03) 3.92 (0.77)Interpersonal Manner 4.20 (0.93) 4.47 (0.58)Communication 4.07 (0.94) 4.1 (0.71)Financial Aspects 3.87 (0.98) 3.97 (0.85)Time Spent with Doctor 3.78 (1.16) 3.7 (0.92)Accessibility/Convenience 3.71 (0.90) 3.83 (0.55)


SCI Nurse Clinician: Participant Process

• Initial assessment and gathering of health information using the Primary Care Checklist

• Development of a self-management action plan• Letter and action plan faxed to primary care physician• Joint visit set and attended (teleconferences may be

substituted if necessary)• Continued support for participant, primary care

physician and community caregivers• Review of plan at nine-month follow-up

CASE STUDIES

Case Study 1• Age: 43• Gender: F• Marital status: Married• Living in her own home• SCI Injury: Traumatic • Date of injury: August 2002 • Level of injury: C4 ASIA B

Case Study 1 (cont.)

Initial Assessment: December 3, 2012• Bladder issues• Bowel issues• Problems with hypotension • Problems with mood • We reviewed a SCI health maintenance plan.


• Action Plan developed but not followed • Reassessment October 21, 2013 • Participant receptive and primary care

physician visit made for Oct 31, 2013


Joint visit with physician - October 31, 2013.

Actions:• Referral made to physiatrist• Physician arranged psychiatry consult• Connected patient with SCI Ontario coordinator • Bowel program - changed to anal irrigation system


• Total number of formal connections with participant – 4

• Total informal communications with participant (e-mail, telephone calls, etc.) -10

• Total number of connections with physician – 2 faxed letters with action plans and 1 joint visit

• Communications with caregivers: 7

Case Study 2

• Age: 46• Gender: M• Marital status: Single• Living in March of Dimes supportive housing• SCI Injury: Arnold Chari malformation • Date of injury: First stroke at age 14,

progression to tetraplegia 2006 • Level of injury: C2/3 Incomplete ASIA B


Initial Assessment : November 29, 2012• Bladder issues• Bowel issues• Issues with neck and shoulder pain• Suggested health monitoring for long term SCI

secondary conditions


Action plan:• Urologist dealing with bladder issues• Education and information given re: bowels• Suggest reschedule missed MRI• Information about accessible labs given • Review SCI health promotion plan with primary

care physician


Joint visit with Physician – February 14, 2013• Date of visit: Scheduled but patient did not

show for appointment despite 1 reminder.

• Second visit with doctor scheduled for May 24, 2013 – 2 reminders – participant did not attend joint appointment.


• Number of communications with participant: 8

• Number of communications with doctor: 1 Faxed letter after assessment

• Number of communications with other care givers: 1 (SCI Ontario coordinator)

Factors Affecting Process

• Willingness of participant to fully engage in process• Willingness of primary care physician to fully engage

in process• Support system (both personal and community

health) • Co-morbidities and complications

Lessons Learned • Practice patience!! • Some physicians engage, others do not – Physician

sub-groups:1. Engaged → productive, collaborative relationship2. Not engaged → non-productive relationship3. Refusal to participate → target the patient and

formal/informal caregivers• Identify a few simple steps to initiate the action plan• Work closely with caregivers and community partners

Future Plans• Ongoing recruitment from the Regional Rehabilitation

Centre, SCI-Ontario.• Additional research assistance for recruitment –

internal to HHS• Recruit patients from acute care prior to repatriation to community

hospitals, from inpatient Rehab and from outpatient clinics

• Continue to extend project to participants in underserviced areas of the LHIN

• Include participants without involvement of primary care physician

• Work ongoing to have Resource Tool available on HHS website

PRESENTATION 2:RHI National Community

Engagement Strategy

Consumer Engagement at RHI

Presented by:Jocelyn Tomkinson,

Consumer Engagement Lead

Who am I?

VisionA world without paralysis after spinal cord injury.

Mission• To lead collaboration, across the global SCI community,

by providing resources, infrastructure and knowledge• To identify, develop, validate and accelerate the

translation of evidence and best practices • To reduce the incidence and severity of paralysis after

SCI, improve health care outcomes, reduce long-term costs, and improve the quality of life for those living with SCI.

How does Consumer Engagement fit at RHI?

RHI Programs

VISIONVISION

PROGRAM 1Cure

PROGRAM 4Commercialization

PROGRAM 3 Consumer

PROGRAM 2 Care

STRATEGY 1Translational

Research

STRATEGY 1Translational

Research

STRATEGY 3Informatics

STRATEGY 3Informatics

STRATEGY 4Network

Development

STRATEGY 4Network

Development

STRATEGY 5Best & Brightest

STRATEGY 5Best & Brightest

STRATEGY 6 Consumer

Engagement

STRATEGY 6 Consumer

Engagement

STRATEGY 2Best Practices

Implementation

STRATEGY 2Best Practices

Implementation

BUSINESS PLANSBUSINESS PLANS

How RHI Works

Why is it important to“consumers” to get involved in research?

• Relative to other conditions, SCI is rare, and each injury is very different.

• Consumer-informed research is more likely to create results that are relevant to you

• Encourages researchers to continue sharing their results in ways that benefit you

• Promotes more informed consumers• Demand for clinicians to become better

informed

• Consumers are “early warning system”

• Promotes transparency• Stealth dissemination• Prevents disconnection of

priority from need• Funders pay attention to

consumer priorities

Why is it important for research to engage consumers?

Balancing Priorities

Consumer needs & priorities

Scientific potential

Clinical problems

Health System/ Funder interests

Beyond stakeholders

+ Beyond passive audience members

Consumer Engagement at RHI

= Create a culture of engagement and inclusion in our research

The Consumer Engagement Strategy (CES) aims to engage people with SCI in the research process, by improving awareness of SCI research knowledge and value and enhance opportunities for people with SCI to make evidence-based health decisions.

RHI’s Consumer Engagement Strategy

CES Key Areas:Create a go-to resource on healthcare and opportunities to maximize recovery after injury

Improve opportunities to engage in, learn and benefit from SCI research

1

2

Inform RHI activities through a Consumer Advisory Board. 3

1. What healthcare should I/my loved one receive after SCI?

2. How can I be more involved in my recovery? (“go the extra mile”)

3. How can we better support people in the early days after SCI?

Go-To Resource

• National approach mandate but provincial healthcare provision

• How to highlight opportunities, services in context without emphasizing inadequacies

• How to provide evidence/info for healthcare decision-making without overriding clinician

• RHI: no direct client mandate• Little evidence

Challenges

= provincial pilot: “roadmap to SCI care & recovery”

• Coordinating public & consumer research events among “Blusson Partners”

• Targeting research events for engagement of consumers in appropriate ways

• Identifying opportunities to improve consumer understanding of SCI research

• Clinical Research Finder tool

Research Exchange

Consumer Advisory Board• Loosely based on the Arthritis Research

Centre’s CAB• Diversity of opinions & experiences• Advocacy, input from consumer perspective• A voice for consumer priorities in RHI

programs and projects• Representation on Cure, Care, and

Commercialization committees.

HOW CAN ONTARIO ALLIANCE BE PART OF THE CONSUMER ENGAGEMENT STRATEGY?

CONSUMER ENGAGEMENT

Winter 2014• Funding………. • Drafting CAB terms of reference & recruiting

initial pilot members of CAB • Developing model and content pilot in BC with

SCI-BC• First Research Exchange Event with ICORD &

SCI-BC on March 3rd

2014• Identify content & format for Go-To Resource

in BC• Proposal and Assessment of peer support in

acute care in Canada• Launch CAB• Support Research Exchange events (including

Working2Walk)

How can Ontario be connected?• SCI organizations have the direct consumer

service & support!• From your strengths: access to peer support

early in acute care– Evaluation & strategy for national availability

• Ontario pilot of roadmap?• National roadmap of SCI care?

Challenges• Funding – primarily for BC pilot• Peer Support in Acute Care – how to build

capacity (not turf)?• Validation of Go-To Resource

Questions?

Thank You Contact:

Jocelyn TomkinsonConsumer Engagement LeadE:

[email protected]

T: 604-675-8879 @rhinstitute

www.rickhanseninstitute.org

ONTARIO SCI RESEARCH NETWORK

Directions for 2014Written Update (October 2013):

http://alliance.sciontario.org/sites/alliance.sciontario.org/files/attachments/OSCIRN_twopage2.pdf

MEETING SCHEDULE &

CLOSING REMARKS

3 February 2014 WELCOME. Objectives Provide updates on government relations advocacy Provide a forum...

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