European Atlas of Access to Myeloma Treatment: a new

approach to advocacy

Ananda Plate Myeloma Patients Europe

ESMO workshop – 5-7 February 2016 – Brussels

MYELOMA PATIENTS EUROPE

• Launched October 2011

• Registered as a non-profit patient association in Belgium

• 36 members, 27 European countries

• Elected Board of Directors, mostly patients or relatives

• Project Manager & Operations Manager

• Funded largely by pharma, but other support too

OUR STRATEGIC OBJECTIVES

• Information, education, best practice exchange, outreach

• Strategic capability & capacity building

• Sustainability of existing groups

• Evidence on needs of patients and their role in research

• Patient-centred research & clinical trials. Help to set up clinical trials where they do not currently exist

• Minimum standards of care & timely access to new treatments

• Shape health policy and initiatives at EU and national levels

RATIONALE: WHY A NEW ADVOCACY APPROACH IS NEEDED

Time gaps

Barriers

Unsuccessful advocacy

Suboptimal patient outcomes

Inequity

Inefficiency

Common goalResearch

Empirical evidence

Treatment limitations

CHALLENGES OPPORTUNITIESNew approaches

Skills Isolation

Collaboration

THE ATLAS APPROACH: ESSENTIAL ELEMENTS TO AVOCATE FOR ACCESS

EVIDENCE

Clinical evidence MM clinical guidelines analysis

Perceived barriers to access survey

STRATEGY

• Clear and achievable goals

• Roadmap

• Learn from mistakes

SKILLS

• Training

• Capacity building

• MentoringData underpinning access barriers health system data

Report

Interactive map

Toolkit / training Implementation pilot Atlas re-assessment

1st Atlas Coach Programme

Aug 2014-Dec 2015 Jan-Dec 2016 Apr-Dec 2016

BARRIERS TO ACCESS PERCEIVED BY CLINICIANS AND PATIENTS ORGANISATIONS: STATISTICAL RELEVANCE

Perceived barriers to access across countries in relation to self declared needs & health expenditure

Health system & socioeconomic data

General health system structure Financing and expenditure HTA process Marketing authorisation Pharma regulation Stakeholder involvement Myeloma incidence

Links, references, information sources, contact details

&

ATLAS COACH PROGRAMME (ACP)

Feb 2016Call for expression of interest

Start of 1st ACPModule 1: How to use the Atlas Module 2: Identifying barriers & priorities Module 3: Identifying key players Module 4: Creating a tailored strategy Module 5: Implementing your strategy Module 6: Evaluating success / adapting strategy to results

End of 1st ACP Oct 2016

Apr 2016

• MPE member • Commitment to invest at a minimum of 20 hours • Commitment to attend 2 day face to face meting

Adaptation of ACP Nov 2016-Apr 2017

Content

Selection criteria

June 2016 Launch of Atlas

Start of 2nd ACP Apr 2017

Apr 2017 Release of updated Atlas

Pilot implem

entation

CONCLUSIONS

• Access issues are complex and country-specific

• To date, advocacy on access to treatment hasn’t solved the issue

• Advocacy will only be effective if we:

• join forces

• have a thorough understanding

of the underpinning issues and barriers

• have empirical evidence

• build a strategy, targeted solutions, skills

• support implementation at local level

European Atlas of Access to Myeloma Treatment

THANKS!

plate@mpeurope.org

Backup slides

Survey: Key variables

Governance Typology of patients’ participation in policy-making. Patients’ participation in the definition of myeloma research priorities and objectives.

Diagnosis Average time between onset of symptoms and diagnosis for patients in your country Awareness of myeloma among general practitioners (GP’s) or family physicians. Availability of diagnostic tests Main perceived barriers to the diagnosis of myeloma. Overall rating of the standard of diagnosis of myeloma.

Treatment Availability of clinical trials. Treatment guided by genetic risk. Standard of treatment at: Frontline setting, 1st relapse, 2nd relapse & Advanced relapse/refractory settings. Availability of the treatment Impact of waiting list by stage of diagnosis/treatment Rating of overall standards of treatment and care Access to support resources for patients Access to support resources for carers Main perceived barriers to the treatment of myeloma. Presence of regional differences in access to treatment within countries.

SURVEY RESULTS: BARRIERS TO

ACCESS BY COUNTRY

Umbrella organisation creates evidence framework

Adaptability of the Atlas approach to other disease areas

Identify local

priorities

Evidence

Strategy &

advocacy plan

Advocate

Observe &

report back

Umbrella organisation gives strategic support

Impact assessment & update of evidence by umbrella organisation

Umbrella organisation gives guidance and coaching

Rational: Why an Atlas?• Major advances in treatment over last decade • Access is still an issue in most countries • Variety of reasons behind access barriers: policy, priorities,

budgets, HTA, pricing • Advocacy for access largely unsuccessful – not understanding

issues • New approaches to advocacy needed including:

• Evidence • Early engagement and collaboration • Skills & training • Strategy & planning

Methodology

Desk review of clinical guidelines / key recommendations, policy documents, grey literature: • Evidence on current treatment approaches • Evidence around variation of access to current treatment • Data on national health systems, HTA and commissioning - reasons

behind access barriers

Comprehensive survey: • Identify perceived variation of access to treatment across Europe • Patient organisations:33 responses / 30 countries • Clinical experts: 39 responses / 29 countries

Expected outputs

Report in two parts: • Methods, findings and recommendations:

▪ League tables to compare access across countries ▪ Analysis of the differences in access between countries ▪ Recommendations for improvement of access across Europe

• Country-specific intelligence underpinning access issues ▪ Profile information for key stakeholders and groups ▪ Strategic, country-specific recommendations

Supported by: • Implementation, coaching, mentoring, measuring and impact reporting

ATLAS COACH PROGRAMME (ACP) IMPLEMENTATION PILOT

Jan 2016Call for expression of interest Call for expression of interest

Start of 1st ACP Start of pilot phase

End of 1st ACP Dec 2016

Apr 2016

End of pilot phase

Start of 2nd ACP Apr 2017

June 2016 Launch of Atlas

Apr 2017 Release of Atlas update

End of 2nd ACP Dec 2017

FEEDBACK

• Launch: communication & dissemination

• Implementation: training for member organisations

• Adaptability to other disease areas

• Challenges