Methods of consumer involvement in developing healthcare policy and research, clinical practice guidelines and patient information material

 

Abstract

Background

The importance of consumer involvement in health care is widely recognised. Consumers can be involved in developing healthcare policy and research, clinical practice guidelines and patient information material, through consultations to elicit their views or through collaborative processes. Consultations can be single events, or repeated events, large or small scale. They can involve individuals or groups of consumers to allow debate; the groups may be convened especially for the consultation or be established consumer organisations. They can be organised in different forums and through different media.

Objectives

To assess the effects of consumer involvement and compare different methods of involvement in developing healthcare policy and research, clinical practice guidelines, and patient information material.

Search methods

For the 2006 version of this review (Nilsen 2006) we searched: the Cochrane Consumers and Communication Review Group's Specialised Register (4 May 2006); the Cochrane Controlled Trials Register (CENTRAL) (The Cochrane Library, Issue 1 2006), MEDLINE (1966 to January Week 2 2006); EMBASE (1980 to Week 03 2006); CINAHL (1982 to December Week 2 2005), PsycINFO (1806 to January Week 3 2006); Sociological Abstracts (1952 to 24 January 2006); and SIGLE (System for Information on Grey Literature in Europe) (1980 to 2003/1). We scanned reference lists from relevant articles and contacted authors.

For the 2009 update we revised the previous search strategies and searched: the Cochrane Central Register of Controlled Trials (CENTRAL), including the Cochrane Consumers and Communication Review Group's Specialised Register (The Cochrane Library, Issue 2 2009), MEDLINE (1950 to May Week 1 2009); EMBASE (1980 to Week 19 2009); CINAHL (1981 to 8 July 2009), PsycINFO (1806 to May Week 1 2009); Sociological Abstracts (1952 to 11 May 2009). We did not search OpenSIGLE for the review update. We scanned reference lists from relevant articles and searched the Science Citation Index Expanded and the Social Sciences Citation Index (1975 to 9 September 2009) for studies citing the included studies in this review.

Selection criteria

Randomised controlled trials assessing methods for involving consumers in developing healthcare policy and research, clinical practice guidelines or patient information material. The outcome measures were: participation or response rates of consumers; consumer views elicited; consumer influence on decisions, healthcare outcomes or resource utilisation; consumers' or professionals' satisfaction with the involvement process or resulting products; impact on the participating consumers; costs.

Data collection and analysis

Two review authors independently selected trials for inclusion, assessed their quality and extracted data. We contacted trial authors for clarification and to seek missing data. We presented results in a narrative summary and pooled data as appropriate.

Main results

We included six randomised controlled trials with moderate or high risk of bias, involving 2123 participants. There is moderate quality evidence that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable to patients, without affecting their anxiety. This 'consumer-informed' material can also improve patients' knowledge. There is low quality evidence that using consumer interviewers instead of staff interviewers in satisfaction surveys can have a small influence on the survey results. There is low quality evidence that an informed consent document developed with consumer input (potential trial participants) may have little if any impact on understanding compared to a consent document developed by trial investigators only. There is very low quality evidence that telephone discussions and face-to-face group meetings engage consumers better than mailed surveys in order to set priorities for community health goals. They also result in different priorities being set for these goals.

Authors' conclusions

There is little evidence from randomised controlled trials of the effects of consumer involvement in healthcare decisions at the population level. The trials included in this review demonstrate that randomised controlled trials are feasible for providing evidence about the effects of involving consumers in these decisions.

 

Plain language summary

Consumer involvement in the development of healthcare policy and research, clinical practice guidelines and information for patients

The importance of consumer involvement at all levels of the health services is widely recognised. This review shows that little research has been done to find the best ways of involving consumers in healthcare decisions at the population level. Most of the included trials compared consultations with consumers with no consultations with consumers. There is moderate quality evidence from two trials that involving consumers in the development of patient information material results in material that is more relevant, readable and understandable, without affecting anxiety. This 'consumer-informed' material can also improve knowledge. Two trials, which compared using consumer interviewers with staff interviewers as data collectors for patient satisfaction surveys, found small differences in satisfaction survey results, with less favourable results obtained when consumers were the interviewers. One trial comparing two informed consent documents, one developed with consumer input and the other developed by the trial investigators, showed that consumer input may have little if any impact on understanding of the trial described in the consent document. One trial, comparing two different methods for involving the public (telephone discussion and a face-to-face group meeting), showed that a face-to-face meeting is most likely to engage consumers and may result in different community health priorities.

 

摘要

背景

醫療照護使用者參與制定醫療政策和研究，臨床指引和病人疾病資訊文件的方法

醫療照護使用者參與醫療計畫的重要性已被廣泛認同。經由諮詢激發觀點或合作過程，讓使用者參與制定衛生政策和研究，臨床準則和提供病人疾病資訊文件。諮詢可以是單次或多次，規模可大可小。可邀請醫療服務使用者個人，或邀請團體以進行辯論。可特別為諮詢，召集一個代表團或建立使用者組織。諮詢可經由不同論壇形式，也可透過不同媒體。

目標

比較不同方式使醫療照護使用者參與衛生政策和研究，臨床指引和提供病人疾病資訊文件，並評估其效果。

搜尋策略

2006年的回顧 (Nilsen 2006) 搜尋the Cochrane Consumers and Communication Review Group's Specialised Register (4 May 2006); the Cochrane Controlled Trials Register (CENTRAL) (The Cochrane Library, Issue 1 2006), MEDLINE (1966 to January Week 2 2006); EMBASE (1980 to Week 03 2006); CINAHL (1982 to December Week 2 2005), PsycINFO (1806 to January Week 3 2006); Sociological Abstracts (1952 to 24 January 2006); and SIGLE (System for Information on Grey Literature in Europe) (1980 to 2003/1) 。 也搜尋文獻列表，檢查是否有相關文章，聯絡相關文章作者。2009年的回顧中，我們修改搜尋策略且搜尋了: the Cochrane Central Register of Controlled Trials (CENTRAL), including the Cochrane Consumers and Communication Review Group's Specialised Register (The Cochrane Library, Issue 2 2009), MEDLINE (1950 to May Week 1 2009); EMBASE (1980 to Week 19 2009); CINAHL (1981 to 8 July 2009), PsycINFO (1806 to May Week 1 2009); Sociological Abstracts (1952 to 11 May 2009) 。 沒有搜尋OpenSIGLE中是否有更新但有搜尋相關文章和Science Citation Index Expanded and the Social Sciences Citation Index (1975 to 9 September 2009) 以找出有引用已被納入試驗的其他文章。

選擇標準

以隨機對照試驗評估用不同方式讓使用者參與衛生政策和研究，臨床指引和提供病人疾病資訊文件。結果測量指標為醫療照護使用者者參與率或回覆率; 使用者觀點被採用的情況; 使用者對決策的影響力; 醫療資源利用情形; 醫療照護使用者或專家對使用者參與過程的滿意度; 對參與使用者的影響和花費。

資料收集與分析

兩個獨立檢閱者選擇應納入的試驗，評估試驗品質和擷取資料。我們連絡試驗作者以釐清和取得缺少的資料。我們將結果用摘要總結的形式呈現，且將適合的資料合併一同分析。

主要結論

包含六個有中到高度偏差風險的隨機對照試驗,共2123位受試者.一個中等品質試驗提供證據顯示:醫療照護使用者參與制定提供病人疾病資訊文件,可以得到較相關且易讀的文件,病人不會覺得焦慮就可瞭解文件內容.這種 ‘告知使用者’ 的文件也可以增進使用者的相關知識.另一個低品質試驗提供證據顯示:採用員工訪員訪問滿意度,和採用醫療照護使用者,結果有些微不同.另一個低品質的試驗提供證據顯示:比起只由主持人撰寫的同意書,有使用者 (可能成為受試者的人) 提供意見而撰寫的受試者同意書,對受試者理解程度沒什麼影響.另有品質很不好的試驗,結果顯示設定社區健康目標優先順序時,與郵件寄送調查書相比,電話討論和面對面訪談較能讓使用者有參與感.不同方式得到的優先順序也不同.

作者結論

隨機對照試驗並沒有提供什麼證據顯示將醫療照護使用者納入醫療決策的制定過程有何種效果.本回顧顯示隨機對照試驗可方便於提供醫療照護使用者參與這些決策的成效證據.

翻譯人

本摘要由成功大學附設醫院尹子真翻譯。

此翻譯計畫由臺灣國家衛生研究院 (National Health Research Institutes, Taiwan) 統籌。

總結

醫療照護使用者參與制定醫療政策和研究,臨床指引和病人疾病資訊文件:醫療照護使用者參與醫療計畫的重要性已被廣泛認同.本回顧文章發現僅少數研究從群體層面探討讓使用者參與醫療決策的最佳適當的方式,大部分納入的研究是比較有諮詢和沒有諮詢使用者.兩個試驗提供中度證據顯示:醫療照護使用者參與制定提供病人疾病資訊文件較相關且易讀的文件,病人不會覺得焦慮就可瞭解文件內容.這種 ‘告知使用者’ 的文件也可增進相關知識.另兩個試驗提供證據顯示:採用員工訪員訪問滿意度和採用醫療照護使用者,結果有些微不同.使用者訪員得到的滿意度略低.另一個試驗比較只由主持人撰寫的同意書,和有使用者 (可能成為受試者的人) 提供意見而撰寫的受試同意書,對受試者理解程度沒什麼影響.另一個試驗比較用兩種不同方式 (電話討論和面對面會議) 讓使用者參與,結果表示面對面會議較能讓使用者有參與感,可能排出不同的社區健康優先順序.