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Parallel Session P4 - Successful campaigning

Detailed Programme and abstracts

Friday, 1 October: 11.00-12.00 (Green Room)

P4.1. Successful campaigning: collaborations with industry

Jessica Federer, MPH, Bayer Healthcare Pharmaceuticals, Berlin, Germany, Jessica.federer@ bayerhealthcare.com

Pharmaceutical companies are the leading corporate donors, contributing over $3.84 billion cash and $3.23 billion in 2008 in product donations, as reported by the 2008 Corporate Contributions Report. However, collaborations with industry are useful for much more than financial resources. In light of the rapidly evolving global development, regulatory and policy environment, this session will provide a brief summary of the information necessary to facilitate compliant, productive, and mutually beneficial relationships between pharmaceutical companies and Alzheimer’s Associations to further enable campaign success.

A strong understanding of the relevant international compliance regulations and guidelines forms the foundation of a productive relationship. The Pharmaceutical Research and Manufacturers of America, European Federation of Pharmaceutical Industries and Associations, Association of the British Pharmaceutical Industry, the International Alliance of Patients Organization, and The National Health Council publish clear guidelines that form the basis for industry relationships and interactions. Once these regulations are understood, organizations can establish their own internal rules of engagement by identifying the principles that must exist within any collaboration with industry. These should include, but are not limited to: integrity, independence, equity, mutual benefit and transparency.

With a solid grounding in the regulations and principles, the next step is to identify your organizational goals and reasons for working with industry. Common reasons for partnership include but are not limited to: financial support, educational programs, access to treatment, patient assistance programmes, lobbying, policy projects, advocacy challenges, interaction with KOLs, networking opportunities, data generation, technical assistance (e.g. website design), promotional support, meeting space and facilitation, business and strategic planning, media planning, distribution of patient organization materials through the sales force staff. More broadly, these interactions fall into three categories. A global health care consultancy organisation, Krueger & Associates, has classified these interactions as traditional, intermediary, and activism. Examples of these interactions will provide additional insights into potential collaborative partnerships.

Lastly, it is helpful to understand the recent changes occurring in the pharmaceutical industry in their perspectives on drug development and approaches to market access. Corporations are adjusting to rising costs, with the average cost of developing a new treatment for any disease over 800 million USD, increasing regulatory hurdles, price pressures, and substantial shifts to the rapid growth of emerging markets. An awareness of these evolutions and understanding the critical and growing role of organisations in this process will enable respectful partnerships and provide insights into how to approach these corporations for campaigns with maximum success.

P4.2. Konfetti im Kopf – a photographic awareness campaign

Michael Hagedorn, Photographer and initiator; Hamburg, Germany, info@michaelhagedorn.de

KONFETTI IM KOPF („Confetti in your head“) is a multi-faceted campaign on dementia, that started in Berlin in October 2009 and will travel to other cities and communities in Germany and internationally. The core of KONFETTI IM KOPF is a large-scale open air exhibition displaying pictures from my long-term photo project on dementia, supplemented by an ambitious programme of workshops, talks and screenings along with uniquely creative and humorous off-programme activities.

Dementia is a socially relevant issue, usually communicated in dreary colours. KONFETTI IM KOPF uses a constructive and colourful approach to handle this subject. Thus the campaing manages to show new perspectives and to encourage people to look into the subject more closely. It is our intention to reach the general public in public space without boundaries, clearing out prejudices about dementia and helping to plant new pictures in heads and hearts of people.

We aim at all parts of society from young children to societal fringe groups to just about everybody. Because dementia matters to all of us. Most importantly our aim is to air the voices of people with dementia through images and texts and by including people with dementia in the campaign in as many ways as thinkable.

During the pre-phase of the campaign start in Berlin 26 professional organisations dealing with age care could be activated to contribute their know-how and manpower. After the main events they unanimously decided to continue working together on future KONFETTI events.

The Patron of the campaign is former Federal President of Germany, Prof. Dr. Roman Herzog. Klaus Wowereit, Mayor of Berlin, also became a Konfetti-mentor, together with celebrities like actors, athletes, authors and singers.

The campaign was present all over Berlin, especially in the Central Station on big banners, posters, bill-boards and screens. At an information desk people could learn about dementia and were encouraged to visit the open-air exhibition. A multi-lingual website (German and Turkish; www.konfetti-im-kopf.de) provides in-depth details about the campaign. Every day visitors were involved in a supporting program with readings, plays, films, concerts, workshops, lectures and dance.

KONFETTI IM KOPF was successful in bringing together many different professional organisations concerned with dementia care and using the synergistic effect for this important issue. Almost 50 German cities expressed their strong interest in participating. The project has evolved a lot after the Berlin kick-off, and 2011 will see some.

P4.3. Policy and pressure: making dementia strategies a reality

Alice Jarratt, 1 Alzheimer’s Society, England, alice.jarratt@alzheimers.org.uk

The United Kingdom is part of a growing European movement to push dementia up the public and political agenda. In this presentation I will share Alzheimer’s Society’s work to develop and implement National Dementia Strategies in England, Wales and Northern Ireland. Delegates will hear about the crucial role of strong evidence and learn about the benefits of involving people with dementia in policy development. I will also discuss how the Society has targeted and worked with influential figures to secure commitment to strategy objectives.

People with dementia and their carers are the true experts in what they need to live well with dementia. I will share lessons in how to ensure they are at the heart of strategy development. I will discuss how the Society involved people with dementia and their carers during official consultations on the draft strategies. The advice of people with dementia and their carers was invaluable in securing strategy commitments that addressed their needs, including greater emphasis on peer support and specific commitments around younger people with dementia.

Strong, hard-hitting evidence is a powerful force for change. Delegates will learn how powerful evidence can ensure dementia strategies translate into better services and support on the ground. I will discuss the Society’s report into the care of people with dementia in hospital, ‘Counting the cost.’ The need to improve dementia care on general hospital wards is recognised in the UK dementia strategies. ‘Counting the cost’ showed that the need for implementation is urgent. The Society’s report surveyed over 2,400 people and found unacceptable variation in the quality of care. The weight of these findings attracted significant media attention and increased pressure on politicians. Improving hospital care for people with dementia, a key strategy objective, is now well and truly on the political agenda. Service improvements include widespread dissemination of ‘This is me,’ a tool to improve person-centred care in hospital and development of the Society’s training course on supporting people with dementia in acute care settings. These development support crucial workforce objectives in the strategies as well as backing up the Society’s call for acute nurses in general settings to have dementia training.

Working widely across a range of organisations is very beneficial for strategy development and implementation. I will discuss the impact of the Society’s work with a range of groups and influential people, including the All Party Parliamentary Group (APPG) in England. The Society’s work with the APPG on an inquiry into the overuse of antipsychotic drugs lead to increased scrutiny and a government review, promised in the English strategy and completed in November 2009. The United Kingdom general election presented another opportunity to work with key groups. Delegates will learn how the Society lobbied politicians to gain manifesto commitments that would implement strategy objectives.

P4.4. Special Populations, Special policy challenges

Michael Splaine, Director, State Affairs, Alzheimer’s Association US, mikesplaine@verizon.net

In the US the development of comprehensive state government Alzheimer plans has led to identification of some narrow bands of persons with the disease and carers and subsequent policy considerations. Among these are persons with Down’s syndrome (a form of mental retardation) now facing the dual diagnosis of Alzheimer’s, incarcerated persons ageing in place and persons with ADRD living alone. This session will describe the populations and preliminary policy recommendations for each subgroup.

 

 
 

Last Updated: Wednesday 03 November 2010

 

 
 

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