• ~ Contact: Alex Wyke    ~ Tel: +44-(0)7960-855-019    ~ Email: report@patient-view.com
• PRESS EMBARGO: London, October 15th, 2019 6AM GMT
• For sample pages go to report CONTENTS (see below)

Drug-treatment information: significant room for improvement

To ensure successful participation in their healthcare treatment, patients need clear, accurate, and helpful information—which they can comprehend sufficiently to be able to discuss topics of importance about their treatment with health professionals. As the UK’s Medicines and Healthcare products Regulatory Agency (MHRA) notes: “Good information helps patients to participate more fully in concordant decision-making about medicines prescribed for, or recommended to, them by healthcare professionals. Self care—a key [UK] government objective—relies heavily on patients having sufficiently high-quality information on which to base their decision-making”.[1.] Other regulators around the world have expressed similar sentiments.

The provision of effective, useful, and timely drug-treatment information by a pharmaceutical company also contributes significantly to how patients (and patient groups) perceive the corporate reputation of that company. Such a fact can hardly be surprising, given that drug-treatment information represents one of the most-important ways in which pharma can legitimately have direct contact with patients.

At issue is whether the drug-treatment information currently supplied to patients is adequate, and fulfils the important purpose of being clear, accurate, and helpful to the recipient patients. Unfortunately, evidence available at the moment seems to suggest that it is not:

• The European trade association for pharmaceutical companies, EFPIA, estimates that patient non-adherence to medication regimens causes 200,000 premature deaths every year in the EU.[2.]
• The ongoing ‘opioid crisis’ in the United States (which re-emerged into the public spotlight again in 2019) is driven by numerous underlying causes. However, the New York-based Center on Addiction believes that better information (capable of helping patients and their families recognise the symptoms of addiction) may have helped prevent the gradual growth of this health concern.[3.]
• Respondent patient groups in the annual PatientView survey, The Corporate Reputation of Pharma—from a Patient Perspective, reports a decline in the quality and usefulness of pharma-company patient information. Just 39% of the 1,500 patient groups responding to the 2018 ‘Corporate-Reputation’ survey describe the industry as “Excellent” or “Good” at providing high-quality, useful, patient information; in 2015, the equivalent figure was 48%.
• Drug shortages have significantly increased in number worldwide since the mid-2000s. Each shortage inevitably impacts negatively on patient health.[4.] PatientView’s July-August 2019 survey of 280 patient groups globally, Improving Drug-Treatment Information from a Patient Perspective, found that 72% of the respondent patient groups think that the patients in their therapy area would like to be able to access information produced by pharmaceutical companies about forthcoming potential drug shortages; and only 2% stated that patients were already getting this information [see table below]. One rare-disease German patient group noted that precise details about drug shortages would provide peace of mind to affected patients.

1. User Testing Policy on Patient Information Leaflets for Parallel importers (MHRA, London, 2019).
2. Annual Review of 2011, and Outlook for 2012 (EFPIA, Brussels, 2011).
3. https://www.centeronaddiction.org/the-buzz-blog/understandingdifference-between-physicaldependence-and-addiction
4. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0215837

What drug-treatment information do you believe patients in your therapy area/specialty would LIKE TO RECEIVE from pharmaceutical companies, BUT ARE NOT GETTING?  Percentage of all responses (ordered highest to lowest)

Source: PatientView's drug-treatment-information guidance document, October 2019

About this drug-treatment-information guidance document

The main source of information that patients have about their prescribed medicines remains the mandatory leaflets found inside medicine packaging. Each leaflet is written to conform to strict legal and scientific guidelines, as determined by regulators. But these leaflets may often be read only once by the recipient patient (if at all).

Responding to the challenge of making drug-treatment information more patient centred is a complex task—but a vital one. To support such efforts, PatientView has therefore produced for industry an evidence-based guidance document on how to improve drug-treatment information from a patient perspective. Feedback was collated from 2,000 patient groups during 2018-2019, including a July-August 2019 survey of 280 patient groups on the specific subject of drug-treatment information.

The PatientView drug-treatment-information guidance document provides a detailed and thorough review of the key issues of importance to patients in the provision of drug-treatment information. The final output of the guidance document is …

(1.) The mapping of the drug-treatment-information needs of patients (across different therapy areas, and different countries/regions of the world).

(2.) A list of patients’ fundamental unmet needs in the area of drug-treatment information. And ...

(3.) A series of 116 questions designed to enable companies to self-evaluate the patient centricity of their product-information strategies, and to inform their planning of future drug-treatment-information support for patients.

Pharmaceutical companies are generally reluctant to intervene unilaterally in the task of improving drug-treatment information. This guidance document, however, shows ways in which they can

Without adequate drug-treatment information, patients continue to face poor health outcomes. Yet pharma companies are usually wary of trying to 'improve' their drug-treatment information on a unilateral basis, due to the strict regulatory restrictions on industry-patient communication that exist in most countries. The patient groups participating in the PatientView July to August 2019 Drug-Treatment-Information survey state that pharma has a responsibility to provide not only the basic, legally-required drug-treatment information, but also to add value and context. One way, for example, in which added value and context can be created is by ensuring that the information is meaningful to sub-sections of the patient community—for instance, older patients, younger patients, patients with co-morbidities, those with a disability, etc—and to provide such distinctive information through channels convenient to patients. Already, many patient groups (some of which are identified in this drug-treatment-information guidance document) have themselves taken on the responsibility of providing drug-treatment information to address the unmet needs of the patient communities they serve. However, these patient groups rely on co-operation from pharmaceutical companies to achieve their goals.

Many pharmaceutical companies today are committed to being more patient centric. Those which have made the decision understand how the approach benefits not only patients, but also the corporate reputation of their own company. This new guidance document provides data-driven advice on how the complex issue of providing outstanding drug-treatment information can be achieved.

CONTENTS OF THE DRUG-TREATMENT-INFORMATION GUIDANCE DOCUMENT (SAMPLE PAGES available below)

To download sample pages, click here: SAMPLE PAGES

FOOTNOTE:

This drug-treatment-information guidance document is the third in a series that provides a ‘deep dive’ into the ways that companies can improve their corporate reputation through being patient centric. The other two documents are …

• PatientView’s Being Patient Centric toolkit. Published in November 2017, the toolkit is a self-assessment framework aimed at helping pharma companies move down the path to patient centricity. The toolkit has been developed from over 10 years of work surveying the needs and perceptions of patient groups.
• PatientView’s Patient Involvement in R&D toolkit. Published in November 2018, this second toolkit summarises the key areas in R&D in which pharma companies can become more patient centric—as defined by patient groups. The toolkit has been developed from two sources: the results of an August-October 2018 PatientView survey of 104 US patient groups on the subject of patient involvement in R&D, plus the results of the November 2017-February 2018 ‘Corporate Reputation of Pharma’ survey of 1,330 patient groups worldwide.

As an evidenced-based approach to meeting patients’ needs in complex areas (and given the strong correlation between effective patient centricity and corporate reputation), this 2019 drug-treatment-informationguidance document also sits alongside PatientView’s annual survey on the Corporate Reputation of Pharma.

END OF PRESS RELEASE