Improving Patient Involvement in Medicines Research and Development:

There is no author summary for this article yet. Authors can add summaries to their articles on ScienceOpen to make them more accessible to a non-specialist audience.

Abstract

The value of patient involvement (PI) in medicines research and development (R&D) is increasingly recognized by all health stakeholders. Despite numerous ongoing PI initiatives, PI so far lacks structure and consistency in approach. Limited formal documentation of PI activities further hampers the sharing of experience and learnings, preventing timely and systematic implementation. This article summarizes the outcomes of several multistakeholder discussions during 2013-2016 in a practical roadmap for PI in medicines R&D. The roadmap highlights specific opportunities for PI along the 4 key stages of the medicines R&D life cycle and is illustrated with concrete examples. This roadmap's aim is to provide a tool to facilitate PI during medicines research and development and is being shared to encourage implementation and further refinement.

Related collections

Most cited references 6

Record: found
Abstract: not found
Article: not found

Helping Patients Follow Prescribed Treatment

R. Brian Haynes, Heather McDonald, Amit X Garg (2002)

0 comments Cited 47 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: not found

Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries.

Joerg Hasford, Euzebiusz Dziwinski, Jan Geissler … (2017)

Optimal adherence to CML therapy is of key importance to maximize treatment effectiveness. Two clinical studies (ADAGIO and Hammersmith) have proven a clear correlation between adherence and achieving optimal treatment response and have revealed that non-adherence is common in CML patients (Marin et al. in J Clin Oncol 28(24):2381-2388, 2010, Noens et al. in Haematologica 99(33):437-447, 2014). The aim of this study is to assess the extent of suboptimal adherence and to investigate motivations and behavioural patterns of adherence in a worldwide patient sample. Questionnaires were provided by the CML Advocates Network and were filled in by patients online and offline. Patient characteristics, treatment and motivations were collected. Adherence was assessed by the 8-item Morisky Medication Adherence scale. Logistic regression models were fitted to investigate the influence of different factors on adherence. Overall, 2 546 questionnaires from 63 countries and 79 CML patient organisations were evaluable. 32.7% of participants were highly adherent, 46.5% were in the medium and 20.7% in the low adherence group. Factors increasing the probability of being in the high adherence group are older age, male sex, management of side effects, only one tablet per day and feeling well informed about CML by the doctor. More than 2 years since diagnosis were significantly lowering the chance as was the use of reminding tools. Living arrangements, multiple medication and personal payment obligations increased the probability to be at least in the medium adherent group. This is the most comprehensive study conducted to date to gain knowledge about factors causing non-adherence in CML. Better information on the disease, medication and management of side effects, supported by haematologists, is key to improve adherence.

0 comments Cited 30 times – based on 0 reviews      Review now

Bookmark

Record: found
Abstract: found
Article: found

Is Open Access

What the public knows and wants to know about medicines research and development: a survey of the general public in six European countries

Suzanne Parsons, Bella Starling, Christine B Mullan-Jensen … (2015)

Objectives To explore public knowledge of, and interest in, learning more about medicines R&D in six European countries. Design Online survey of 6931 members of the public across Europe. Methods The survey formed part of a public omnibus survey. A quota sampling approach was used with quotas set according to national census data on age, gender and government region. The survey explored the public's knowledge and awareness of medicines R&D, their interest in learning more and the perceived influences on this. Results The survey was completed by 6931 members of the public, over 75% of whom reported having no or less than good knowledge of medicines R&D. Males were more likely than females to report good knowledge (17% vs 15%), and knowledge appeared to decrease with age. Those who were currently or had previously been involved in medical research were almost five times more likely to report good knowledge of medicines R&D overall (43% vs 13%). Participants reported good knowledge of medicines safety and clinical trials but little knowledge of pharmacoeconomics. They were most interested in learning more about medicines safety and personalised and predictive medicine and least interested in pharmacoeconomics. Older people, women and respondents with current good knowledge of medicines R&D were most interested in learning more about medicines R&D. Conclusions Experience of medical research appears to play a key role in increasing public awareness of and future interest in medicines R&D. Some groups may need to be specifically targeted to increase their awareness of medicines R&D, for example, women expressed great interest in learning more but reported less knowledge than men. It may be useful to explore further the views of those who are currently uninterested in learning more.

0 comments Cited 12 times – based on 0 reviews      Review now

Bookmark

All references

Author and article information

Journal

Title: Therapeutic Innovation & Regulatory Science

Abbreviated Title: Drug Inf J

Publisher: SAGE Publications

ISSN (Print): 2168-4790

ISSN (Electronic): 2168-4804

Publication date Created: September 05 2017

Publication date Created: September 2017

Publication date (Electronic): May 08 2017

Publication date (Print): September 2017

Volume: 51

Issue: 5

Pages: 612-619

Affiliations

[1 ]European Patients’ Academy on Therapeutic Innovation, Riemerling, Germany

[2 ]Melanoma Patient Network Europe, Uppsala, Sweden

[3 ]Uppsala University, EBC, Uppsala, Sweden

[4 ]Patient Strategy, Haematology and Professional Relations, Novartis Oncology Region Europe, Italy

[5 ]Amgen Europe GmbH, Zug, Switzerland

[6 ]Mary Uhlenhopp is currently at Global Advocacy, Oncology and Immunology, Shire, Zug, Switzerland

Article

DOI: 10.1177/2168479017706405

PubMed ID: 30231692

SO-VID: b68db60d-34ac-4af3-8b78-355a31987842

License:

http://journals.sagepub.com/page/policies/text-and-data-mining-license

History

Data availability:

Comments

Comment on this article

scite_

Cited by 40

See all cited by

Most referenced authors 548

See all reference authors

- Version 1

Improving Patient Involvement in Medicines Research and Development: : A Practical Roadmap

Read this article at

Abstract

Related collections

Malaria vaccine development

Most cited references 6

Helping Patients Follow Prescribed Treatment

Factors influencing adherence in CML and ways to improvement: Results of a patient-driven survey of 2546 patients in 63 countries.

What the public knows and wants to know about medicines research and development: a survey of the general public in six European countries

Author and article information

Journal

Affiliations

Article

History

Comments

Comment on this article

Similar content 2,170

Cited by 40

Most referenced authors 548