personalised medicine congress (eapm) - dr derick mitchell - november 2017

November 29th, 2017

PATIENTS – SCIENCE – INDUSTRY

1st European Alliance for Personalised Medicine Congress

Derick Mitchell

European Alliance for Personalised Medicine Congress29/11/2017 www.ipposi.ie

Heart of the PM Ecosystem?

“Just because a system has patient data at its core does not

mean it is patient-centric”

Jane Grimson


Linking Personalised Medicine & Public Health

• Making better use of patient data (health, genomic, experience)

• Engaging citizens on discourse on precision health

• Improving Genetic Health Literacy

• Adapting HTA frameworks, Real-World Evidence,

• Tackling information governance, consent, Electronic Health Records

HOW CAN PM CHANGE PUBLIC HEALTH PRACTICE?


Collaborative sensemaking

“We are witnessing the collapse of expertise and the rise of

collaborative sensemaking”

David Holzmer


Evidence-based patient advocacy

In God We Trust…..…Everyone Else Bring Data!


IPPOSI? Who?IPPOSI

A patient-led organisation

that works with patients,

government, industry,

& science to put patients at

the heart of health innovation


IPPOSI Priorities + Members

20

Actively advocate for improved + equitable

patient access to Health Innovation

Promote meaningful patient involvement in

Health Research and Policy


Patient-led activities

Health Hacks

Workshops

Consultations

Round-tables

Working Groups

Summer Schools

Conferences

Clinical Research

Health Information

Patient Data

Health Economics

Patient Registries

Dynamic Consent

Data Protection


Incorporating the patient voice

• Hierarchical Rhetoric

• ‘Walking the walk’ at the highest possible level

Challenges:• Decision-makers never want to change their processes

• Patients are not trained in health policy, dialogue

• Many patient orgs are not focused on policy issues

“The perfect is the enemy of the good”


What do we need to enable use (& re-use) of patient data?

Good

EducationLegal

Frameworks

SOPsFrameworks of

Engagement


What we have learned…

• Trustworthiness is vital….• patients must believe that their data is secure and only used

for the purposes they consented to

• Equally….• create the situation where patients are the drivers of their

data, ensuring it is utilised to improve their health


IPPOSI & The European Patients Academy

• EUPATI produces Expert Patients on Medicines Research & Development

• Provides Training & Education

• Disseminates through national platforms

The project received support from the Innovative Medicines Initiative Joint Undertaking under grant agreement n° 115334, resources of which are composed of financial contribution from the European Union's Seventh Framework Programme (FP7/2007-2013) and EFPIA companies.

www.eupati.eu


Roles change as a result of EUPATI course

Role Before EUPATI After

Member of patient organisation, not actively involved 17% 2%

Active role in a patient organisation 62% 71%

Leadership role in a patient organisation 62% 71%

Employee of a patient organisation 25% 23%

Volunteer role in a patient organisation 60% 67%

Presenting at conferences, workshops etc. 63% 83%

Advising a pharmaceutical company 13% 44%

Advising a regulatory agency 21% 42%

Advising a reimbursement agency 4% 8%

EUPATI Fellows are increasingly taking leadership roles and are engaging with pharma, regulators and HTA bodies. Role changes also imply identity shifts


The Power of Patient Education

7-month programme in Health Innovation

Blended Learning – online + workshops

3 x 6-week modules

• Clinical Trials

• Regulatory Affairs

• Health Technology Assessment

4 x Education Partners - UCD, TCD, HPRA, HIQA

1 elearning website - www.patientsinvolved.ie

21 Students from 9 counties

http://www.patientsinvolved.ie/


Frameworks of Engagement

2008 - National Strategy for Service User Involvement in

Health and Social Services (DoHC & HSE)

---------------------------------------------------------------------------

2016 – Values in Action, QID Cultures of Person-centeredness (HSE)

2016 – Mental Health Local Recovery Groups (HSE)

2016 – Privacy Impact Assessment for Individual Health Identifier

(eHealth Ireland)

2017 - National Patient Experience Survey - Hospitals (HIQA, HSE, DoH)

2017 - National Clinical Effectiveness Committee – PPI Values

(DoH, NCEC)

2017 –Personas for Electronic Health Records (eHealth Ireland)

2017/18 - Patient Narrative Project on Person-centered care

(CSPD-HSE, IPPOSI)


The Patient Narrative Project

Reference: Phelan A., Rohde D., Casey M., Fealy G., Felle P., Lloyd H. & O’Kelly G. (2017) Patient Narrative Project for Person-Centred Co-ordinated Care. UCD, IPPOSI & HSE, Dublin.

Phases 1 + 2 + 3:

Person-centered, co-ordinated care

Person centered co-ordinated care

Phase 1

What people in Ireland want to experienceduring their care when they require anumber of health services at one time orover time

Phase 2 + 3

A framework that will hear peoples’ experiences of using more than one health service at a time

11 Focus

Groups

2 Online

Surveys

4 Regional

Workshops

Output: Statements (19) + Definition (1)

Online Survey

+ System

Partnerships


Themes Emerging From Phase 1

My healthcare

experiences

Healthcare I am

confident in

My journey through

healthcare


My Journey through Healthcare

• My care includes issues that my health influences, such as finances, housing, employment, ability to travel and access to transport.

• I have services delivered by the most suitable healthcare staff in the correct setting and when I need them.

• I can have one person who will oversee and follow up on all my care.


Phase 2

• http://www.hse.ie/yourvoicematters

http://www.hse.ie/yourvoicematters


• Survey remains live• Proof-of-Concept• Producing data on patients’ experience of care when they use

more than one health service

• Target: • 1000 stories nationally, particularly in relation to older people and

people with chronic conditions

• Channel through Integrated Care Programmes HSE

By end of 2017… By end of 2018…

A ‘tried and tested’ framework

• To hear a high volume of patients’ experiences through the online survey

• To use data to influence service design, delivery and improvement of integrated care

• A qualitative and quantitative evaluation of the proof of concept within the context of the HSE;

Integration into ‘business as usual’

• Framework (incl. resource implications) to be integrated into a ‘business as usual’ model

• Quality and Patient Safety Structures at CHO level will be essential

• QID publication: ‘Quality and Safety Committees; Guidance and resources’


Patient Narratives in PM?

Right treatment, Right time, Right patient

at the right location, by the right provider, at the right cost

Minimally Disruptive Treatments

• Impact on clinical trial design

• Impact on clinical guidelines

• Impact on clinical practice

• Impact on service delivery, coordinationV-T Tran et al. (2015) Taxonomy of the burden of treatment: a multi-country web-based qualitative study of patients with chronic conditions BMC Medicine 13:115


Where we want to get to…

INFORM ENGAGE EMPOWER

Thank you!

@IPPOSI

www.ipposi.ie

[email protected]

http://www.ipposi.ie/

mailto:[email protected]

personalised medicine congress (eapm) - dr derick mitchell - november 2017

Health & Medicine