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Defining patient centricity with patients for patients and caregivers: a collaborative endeavour

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      Abstract

      BackgroundPatient engagement is an essential aspect in the research/development of biopharmaceutical products and disease management. Improving the lives of patients requires a deep understanding of their medical conditions, experiences, needs and priorities. However, a consistent definition of patient centricity is lacking. A series of initiatives was conducted to define patient centricity and its important principles impacting the biopharmaceutical industry.MethodsInterviews, questionnaires and literature reviews were conducted involving key stakeholders to initially identify issues of importance to patients, healthcare providers and payers. Subsequently, two identical workshops which included 22 patients/carers created a definition of patient centricity and the healthcare values important to patients/caregivers. Outputs were tested in a validation exercise involving patients in predominantly US (n=470) and European (n=703) patient forums.ResultsInitial research provided deeper understanding of patient needs and key topics of interest that were used to cocreate a definition of patient centricity and 10 associated principles of importance to the biopharmaceutical industry. Wider testing of these outputs among predominantly US/European patient communities confirmed their validity. Patient centricity should be defined as ‘Putting the patient first in an open and sustained engagement of the patient to respectfully and compassionately achieve the best experience and outcome for that person and their family’. Important principles for patients focused on education/information, cocreation, access and transparency.ConclusionsThe development of a consistent definition of patient centricity and its associated principles provides an opportunity for biopharmaceutical companies to adopt and use these as a reference point for consistent patient engagement throughout the product life cycle.

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      Most cited references 9

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      Medication adherence: WHO cares?

      The treatment of chronic illnesses commonly includes the long-term use of pharmacotherapy. Although these medications are effective in combating disease, their full benefits are often not realized because approximately 50% of patients do not take their medications as prescribed. Factors contributing to poor medication adherence are myriad and include those that are related to patients (eg, suboptimal health literacy and lack of involvement in the treatment decision-making process), those that are related to physicians (eg, prescription of complex drug regimens, communication barriers, ineffective communication of information about adverse effects, and provision of care by multiple physicians), and those that are related to health care systems (eg, office visit time limitations, limited access to care, and lack of health information technology). Because barriers to medication adherence are complex and varied, solutions to improve adherence must be multifactorial. To assess general aspects of medication adherence using cardiovascular disease as an example, a MEDLINE-based literature search (January 1, 1990, through March 31, 2010) was conducted using the following search terms: cardiovascular disease, health literacy, medication adherence, and pharmacotherapy. Manual sorting of the 405 retrieved articles to exclude those that did not address cardiovascular disease, medication adherence, or health literacy in the abstract yielded 127 articles for review. Additional references were obtained from citations within the retrieved articles. This review surveys the findings of the identified articles and presents various strategies and resources for improving medication adherence.
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        Patient-Focused Drug Development: A New Direction for Collaboration.

        Patient-Focused Drug Development (PFDD) is a new initiative from the Food and Drug Administration (FDA) intended to bring patient perspectives into an earlier stage of product development. The goal is that patients will be able to provide context for benefit-risk assessments and input to review divisions, and also aid in the development of new assessment tools, study endpoints, and risk communications. This paper provides a summary on what is known to date about FDA's PFDD initiative and describes implications for patients, researchers, payers, and the biopharmaceutical industry. It also provides a roadmap for stakeholders to consider in defining their role in and in shaping PFDD's direction, and for expanding PFDD principles to conditions beyond the current 20 under FDA consideration.
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          How a patient advocacy group developed the first proposed draft guidance document for industry for submission to the U.S. Food and Drug Administration

          Among the challenges confronting patients with rare diseases is a dearth of treatment options. The development of safe and effective new therapies is hampered by challenges associated with conducting clinical trials in small populations. In this article, we describe how the Duchenne muscular dystrophy community–led by Parent Project Muscular Dystrophy–created a proposed draft guidance document for industry for submission to the U.S. Food and Drug Administration. This unprecedented undertaking involved a broad coalition of more than 80 stakeholders collaborating across nine time zones to produce a document in only 6 months. We hope that other rare disease communities and advocacy organizations can use our experience as a model for developing their own draft guidance documents. Electronic supplementary material The online version of this article (doi:10.1186/s13023-015-0281-2) contains supplementary material, which is available to authorized users.
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            Author and article information

            Affiliations
            [1 ]AstraZeneca Pharmaceuticals , Melbourn, UK
            [2 ]Patient Project Muscular Dystrophy , Hackensack, New Jersey, USA
            [3 ]11Health , Borehamwood, Hertfordshire, UK
            [4 ]Corvista , Cheshire, UK
            [5 ]AstraZeneca Pharmaceuticals , Gaithersburg, Maryland, USA
            [6 ]Formerly AstraZeneca Pharmaceuticals , Macclesfield, UK
            Author notes
            [Correspondence to ] Guy Yeoman, AstraZeneca Pharmaceuticals, Da Vinci Building, Melbourn Science Park, Melbourn, Royston, SJ8 6HB UK; Guy.Yeoman@ 123456astrazeneca.com
            Journal
            BMJ Innov
            BMJ Innov
            bmjinnov
            bmjinnov
            BMJ Innovations
            BMJ Publishing Group (BMA House, Tavistock Square, London, WC1H 9JR )
            2055-642X
            April 2017
            24 March 2017
            : 3
            : 2
            : 76-83
            5468520
            bmjinnov-2016-000157
            10.1136/bmjinnov-2016-000157
            Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/

            This is an Open Access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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            Funding
            Funded by: AstraZeneca, http://dx.doi.org/10.13039/100004325;
            Categories
            Health IT, systems and process innovations
            1506
            1507
            2268
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            unlocked
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