Myeloma UK Policy Working with the Pharmaceutical Industry

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1 Policy Working with the Pharmaceutical Industry Background The relationship between patient organisations and the pharmaceutical industry has come under increasing scrutiny in recent times, with the media and politicians questioning the ability of organisations to maintain their impartiality and independence in the face of receiving, sometimes significant, funding from industry. understands the importance of working in partnership with all stakeholders with an interest in myeloma, including the pharmaceutical industry, to achieve common goals. We acknowledge that both collaborative working and financial support from pharmaceutical companies is vital but at the same time we recognise the need for such partnerships to be transparent and able to stand up to scrutiny. As a result, has developed a policy document defining how we engage with the pharmaceutical industry. This will ensure we can withstand external scrutiny of our decisions and actions whilst at the same time allowing us freedom to work in a way which ultimately benefits myeloma patients and their families. About the policy This policy document defines how works with pharmaceutical, diagnostic and medical device companies, including the funding we receive and the way in which we conduct our relationship with them. This is important to ensure that we: demonstrate our independence and impartiality are transparent, consistent and fair when working with industry maintain our integrity and reputation within the charity, cancer and health sectors remain true to our patient-centred approach, putting patients at the heart of everything we do to ensure best possible outcomes show our commitment to working collaboratively with pharmaceutical companies, alongside other stakeholders involved in myeloma, to improve patient outcomes remain accountable to our stakeholders and our Board of Directors All pharmaceutical companies that collaborates with will receive a copy of this policy and must agree to work within its principles. This policy also complies with other relevant measures that have been put in place to ensure a clear, transparent and honest working relationship between pharmaceutical companies and the charitable sector, such as the ABPI Code of Conduct. Company No Charity No. SC is an Investor in People 1

2 Rationale for working with industry We work with pharmaceutical, diagnostic and medical device companies for a number of important reasons: to obtain important background information on treatments, diagnostic tests and medical devices that could benefit myeloma patients and improve the quality of treatment and care provided to them to enable us to produce factual, accurate, impartial and up-to-date information for our website and written publications on myeloma treatments, tests and procedures for patients and their families to provide opportunities to raise awareness of myeloma and to improve the quality of treatment and care in myeloma, including access to new medicines, tests and procedures as an organisation which is dependent on voluntary donations, also relies on a wide variety of funding sources, including funding from pharmaceutical companies What type(s) of funding does receive from companies? currently engages with around a dozen pharmaceutical, diagnostic and medical device companies, all of whom manufacture treatments, tests or equipment for use in myeloma. We also receive funding from the majority of these companies, either on an ad-hoc, annual or multiyear basis. The funding we receive comes in the form of the following: Project funding to undertake a specific project of mutual interest and of benefit to the myeloma community Core funding the company gives an unrestricted grant for to support our programmes and services Donations in-kind where the company offers services such as agency assistance with a project What rules do we apply to the funding we receive? The total level of funding received from pharmaceutical companies on an annual basis does not exceed in excess of 10% of our total income, excluding research funding. The other 90% comprises voluntary donations from individuals and fundraising activities and we receive no statutory funding from Government. All companies that collaborates with must either be members of the Association of British Pharmaceutical Industry (ABPI) or adhere to the ABPI Code of Practice where relevant and applicable. The ABPI Code of Practice for the Pharmaceutical Industry 2011 sets out the obligations of pharmaceutical companies when working with patient organisations. works to ensure that both parties in any agreement work to fulfil these obligations and adhere to its rules. Company No Charity No. SC is an Investor in People 2

3 When receives funding both parties must sign: An agreement or contract, drawn up by the company which sets out the conditions of the funding (in the case of companies who manufacture treatments for myeloma) In some instances, when funding is granted for a specific project, a certification agreement may be required under the ABPI Code of Practice (in these cases this is provided by the company) All funding is acknowledged in the Annual Report, Annual Review and Financial Statement of Accounts. Research funding also receives money from pharmaceutical companies to help support the running of our Clinical Trial Network. Established in 2009, the Network takes a structured and prioritised approach to early phase myeloma clinical studies, to shorten the time to get new treatment to patients and bring together all the key players in a collaborative and strategic manner. Pharmaceutical companies provide funding for specific trials in which they have also supplied an early phase developmental drug. This funding supports the running costs of the trials, specifically to fund the clinical trials office and supportive funding for the participating hospitals. In working with these companies and receiving their funding, we remain completely independent and free from control. The company may comment on the trial design but these are investigator led, non commercial studies and the decisions rest with the clinicians involved. The most pertinent clinical trials to be undertaken are identified based on key objectives and developed and prioritised by a Steering Group of myeloma specialists. Stakeholders throughout the NHS, HTA, patients and the pharmaceutical industry then work together to implement the most effective clinical trial design and ensure effective adoption of data. The amount of funding received from companies for us to undertake our work with the Clinical Trial Network varies depending upon the study and in some years is considerably higher than the amount we receive for our educational grants. However, this process is strictly governed by contracts which are put in place with each of the companies and the terms and conditions on which the funds are given is made clear and monitored on a regular basis. What guidelines does follow when working with the pharmaceutical industry? is very clear on how it works with, conducts relations and receives funding from pharmaceutical companies. The guidance we follow is set out as follows: Company No Charity No. SC is an Investor in People 3

4 General guidelines collaborates with a variety of companies, giving no preference to any one company in particular We do not allow companies to influence our strategy, activities or information We will not promote, endorse or favour any particular product In order to ensure impartiality, funding from pharmaceutical, diagnostic and medical device companies will never exceed 10% (excluding research funding) of our total annual income. retains the right to terminate any working relationship with a company who is seeking to coerce to conform to its agenda Under data protection legislation, namely the Data Protection Act 1998, will not share or disclose any confidential information regarding its service users or supporters to pharmaceutical companies or their agencies The way in which we conduct our relations with the pharmaceutical industry also applies to any public affairs or public relations agencies that pharmaceutical companies employ to act on their behalf Use of the name, logo and other publicity Our name must not be used by companies, their partners or agencies without prior consultation Written approval must be sought for any material or copy produced which refers to Myeloma UK, from the Communications and External Affairs Director at Our logo must not be used without prior approval and must be used in compliance with the brand guidelines Any press releases referring to, or containing quotes from members of staff, must have prior agreement and approval Information and publications retains full control over all its publications and printed materials even when they relate to a treatment provided by a particular company Where information relates to a type of treatment where there is more than one product available, will include a full, factual and impartial description of each of these products in their literature and will make reference to available evidence and guidelines to support the use of these treatments Reference to both brand names and generic names will always be included in patient information Company No Charity No. SC is an Investor in People 4

5 Surveys and market research From time to time, will engage in collaborative patient surveys or focus groups, providing: They are sufficiently broad in focus Their objectives reflect our strategic aims and are of value to our organisation as well as the company Conform to good market research standards and are ethical Allow to retain final editorial control, to pilot the survey with our service-users prior to publication There is a commitment to publish the results in an objective (peer-reviewed) format Policy and HTA submissions Occasionally will have shared policy goals with companies, such as the introduction of new treatments for myeloma. Advocacy activities, such as making patient interest submissions to HTA bodies is not considered promotion of a product because these activities are intended to improve access to the treatment rather than recommend it be prescribed. However, in making HTA submissions we will always represent the patients best interests and the content of these submissions remains completely free from influence by the manufacturing company. We also work closely with other stakeholders such as clinicans and guideline groups and we will not endorse the adoption of products on the NHS where evidence and health economic information may be lacking or when they do not logically fit into the myeloma treatment pathway. will consider joint working on advocacy activities, but will not accept funding specifically or exclusively for these activities. For policy and campaigning activities we will work within the following framework: Independence, or perceived independence of our organisation, should not be compromised There must be complete transparency Information presented by will objectively communicate the value that patients place on a specific treatment, from their own perspectives and where possible in their own words, garnered through surveys, anecdotal evidence and telephone interviews, compared to other standard treatments may from time to time campaign for the availability of a treatment produced and promoted by a company from which we have received funding in the past or is currently receiving funding. In these cases the nature of this relationship will be fully declared, particularly with HTA submissions where this is a condition of submitting evidence Company No Charity No. SC is an Investor in People 5

6 About this policy This statement has been put together in consultation with the ABPI and other charities. Myeloma UK reviews its policies regularly. Further information is available from on Date of publication: October 2013 / Date of next review: October 2015 Company No Charity No. SC is an Investor in People 6