PATIENTS – SCIENCE – INDUSTRY

RSCI Research Summer School, June 7th, 2017

Derick Mitchell, PhD

Evidenced-based patient advocacy?

“The perfect is the enemy of the good”

http://metro.co.uk/2015/05/19/intermarche-campaign-celebrating-ugly-fruit-and-veg-is-brilliant-5204782/

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 policy, R&D dialogue

• Many patient orgs are not focused on policy/R&D issues

IPPOSI? Who?IPPOSI

A patient-led organisation that works with patients, government, industry,

& science to put patients at the heart of health innovation

Our Priorities

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

Conferences

Consultations

Round-tables

Working Groups

Training Days

Rare Diseases

eHealth

Clinical Research

Health Information

Health Economics

Patient Registries

Biobanking

Irish public perception

Irish general public’s attitude towards clinical research

Conclusions

Public Survey

• Limited understanding of how one can participate

(donating blood/tissue, medical info.)

• Ethical concerns

• Unnecessary Risk

IPPOSI patient members (anecdotal)

(➕)• Access to innovative medicines &

technologies

• Improved quality of care

(➖)• Benefit : Risk

• Randomization

• Compassionate Use

• Ending of trial

Educated Patient Communities

IPPOSI Training for Members

• Clinical Research• Health Technology Assessment• Pharmaceutical Code of Practices• Health Informatics (coming soon!)

EUPATI produces Expert Patients on Medicines R&D

• Training & Education• Disseminates through national platforms

Areas covered by the Patients’ Academy

1.Medicines development process from research to approval

2. Personalized and predictive medicine

3.Drug safety and risk/benefit assessment of medicines

4. Pharmaco-economics, health economics and health technology assessment

5. Design and objectives of clinical trials (& roles of stakeholders)

6. Patients roles & responsibilities in medicines

development

…and NOT:

develop indication-

or therapy-specific

information!

EUPATI Toolbox – www.eupati.eu

EUPATI Toolbox – Content available

Infographics

Articles

Fact sheets

PowerPoints

Videos

Roles change as a result of EUPATI course- creating patient leadersRole 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.

Creating patient leaders

Irish Patient Education Programme

• 2017 Pilot

• 20 places for patients / patient advocates

• Pilot modules• Clinical Trials• Regulatory Aspects incl. Benefit:Risk• Health Technology Assessment

Will it make any difference?

Patient involvement can:

• Provide a different perspective

• Make language + content of research information clear and accessible

• Help to ensure research methods are acceptable and sensitive

• Help ensure that research uses outcomes that are important to the public

• Help increase participation in research in general

Building a new Irish healthcare environment

2016 – Mental Health Local Recovery Groups (HSE)

2016 - Patient Narrative Project on Person-centered care (CSPD-HSE, IPPOSI)

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

2017 - National Clinical Effectiveness Committee – PPI Values (DoH, NCEC)

2017 –Personas for Electronic Health Records (eHealth Ireland)

Building a new Irish health research environment

2014 - PPI paper - Irish Health Research Forum

2016/17 - PPI reviewers - HRB

2017 - PPI Ignite Funding – HRB + IRC

2017 – Scientific Advice – Patient Involvement – HPRA

Health Information & Patient Safety Bill?

Human Tissue Bill??

Take Home Messages

Patient involvement can improve research quality

Education + Training of both patients & researchers is key

Support patient networks, communities & spread the word!

@IPPOSI www.ipposi.ie