Experiences, practices and barriers to accessing health information : a qualitative study

Abstract Background: With technology advancements making vast amounts of health information available whenever and wherever it is required, there is a growing need to understand how this information is being accessed and used. Objective: Our aim was to explore patients/public and health professionals’ experiences, practices and preferences for accessing health information. Methods: Focus groups were conducted with 35 healthcare professionals (31 nurses and 4 allied health professionals) and 14 patients/members of the public. Semi-structured interviews were conducted with 5 consultants, who were unable to attend the focus groups. Data collection took place between March and May 2013 and all data were analysed thematically. Results: Health professionals and patients/members of the public reported primarily accessing health information to inform their decision making for providing and seeking treatment respectively. For all participants the internet wasthe primary mechanism for accessing health information, with health professionals’access affected by open access charges; time constraints and access to computers.Variation in how patients/members of the public and health professionals appraisethe quality of information also emerged, with a range of techniques for assessingquality reported. Conclusions: There was a clear preference for accessing health information onlinewithin our sample. Given that this information is central to both patient and healthprofessionals’ decision making, it is essential that these individuals are basing theirdecisions on high quality information. Findings from this study have implications for educationalists, health professionals, policymakers and the public. Keywords: Information; Information Technology; Health information; e-health: Qualitative researc

When participants get involved: reconsidering patient and public involvement in clinical trials at the MRC Clinical Trials Unit at UCL.

BACKGROUND: Patient and public involvement (PPI) in clinical trials aims to ensure that research is carried out collaboratively with patients and/or members of the public. However, current guidance on involving clinical trial participants in PPI activities is not consistent. METHODS: We reviewed the concept of participant involvement, based on our experience. Two workshops were held at the MRCCTU at UCL with the aim of defining participant involvement, considering its rationale; benefits and challenges; and identifying appropriate models for participant involvement in clinical trials. We considered how participant involvement might complement the involvement of other public contributors. Both workshops were attended by two patient representatives and seven staff members with experience of PPI in trials. Two of the staff members had also been involved in studies that had actively involved participants. They shared details of that work to inform discussions. RESULTS: We defined trial participants as individuals taking part in the study in question, including those who had already completed their trial treatment and/or follow-up. Because of their direct experience, involving participants may offer advantages over other public contributors; for example, in studies of new interventions or procedures, and where it is hard to identify or reach patient or community groups that include or speak for the study population. Participant involvement is possible at all stages of a trial; however, because there are no participants to involve during the design stage of a trial, prior to enrolment, participant involvement should complement and not replace involvement of PPI stakeholders. A range of models, including those with managerial, oversight or responsive roles are appropriate for involving participants; however, involvement in data safety and monitoring committees may not be appropriate where there is a potential risk of unblinding. Involvement of participants can improve the trial experience for other participants; optimising study procedures, improving communications; however, there are some specific, notably, managing participant confidentiality and practicalities relating to payments. CONCLUSIONS: Participant involvement in clinical trials is feasible and complements other forms of PPI in clinical trials. Involving active participants offers significant advantages, particularly in circumstances where trials are assessing new, or otherwise unavailable, therapies or processes. We recommend that current guidance on PPI should be updated to routinely consider including participants as valid stakeholders in PPI and potentially useful approach to PPI

Patient and public involvement in the early stages of clinical trial development: a systematic cohort investigation

Incorporation of PPI within the development of the outline application or specification of plans for future involvement was low. Funder requests for applicants to provide information on PPI and justification for its absence should be welcomed but further research is needed to identify the impact of this on its contributions to research. Comments on PPI by reviewers should be directional rather than state that an increase is required. Challenges facing applicants in initiating PPI prior to funding need to be addressed

"PROUD to have been involved": an evaluation of participant and community involvement in the PROUD HIV prevention trial.

BACKGROUND: The PROUD trial, a HIV prevention trial in men who have sex with men and trans women, set out to involve community representatives and trial participants in several ways. PROUD also aimed to evaluate participant involvement, to learn lessons and make recommendations for future clinical trials. METHODS: Two structured surveys, one of participant and community representatives involved in the PROUD study, and the other of researchers from the PROUD team, were carried out in 2017. The results from the surveys were reviewed quantitatively and qualitatively, and themes emerging from the data identified and synthesised. RESULTS: Survey invitations were sent to 88 involved participants, 11 community representatives and 10 researchers. The overall response rate was 55% (60/109). Overall, participants were younger than community representatives, and the majority were from Greater London. As expected, participants were predominantly involved in participant involvement meetings and community representatives in management committees.Participants and community representatives cited different motivations for getting involved in PROUD. Overall, participants were positive about their involvement; only two participants rated their experience unfavourably. Community representatives were also broadly positive. Most participants and all community representatives felt their involvement made a difference to the trial, themselves and / or the organisations they represented. However, some participant answers reflected the impact of participation in the trial rather than involvement in PPI activities.Researchers felt that PPI had positive impact across the entire trial cycle. Half felt they would have liked there to have been more PPI activity in PROUD. Researchers noted some challenges and recommendations for the future, including need for adequate funding, more engagement in PPI by all researchers, the need for PPI expertise to facilitate involvement activities and training and mentoring in PPI. CONCLUSIONS: Involving clinical trial participants and wider community representatives as active partners in PPI is feasible and valuable in trials. Researchers are encouraged to consider and appropriately resource participant involvement and prospectively evaluate all PPI within their trials

Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey

OBJECTIVE: To assess the extent to which consumers are involved in the work of clinical trial coordinating centres in the United Kingdom and the nature of consumers' involvement in randomised trials coordinated by these centres. DESIGN: National surveys using structured questionnaires with some open ended sections. SETTING: 103 clinical trial coordinating centres in the United Kingdom identified through a database assembled in 1997 by the NHS clinical trials adviser. PARTICIPANTS: Named contacts at 62 coordinating centres and investigators in 60 trials that were identified as involving consumers. MAIN OUTCOME MEASURES: Number of coordinating centres and number of trials in which consumers were involved and the nature of consumers' involvement. RESULTS: Of the 62 eligible centres, 23 reported that consumers had already been involved in their work, and most respondents were positive about this involvement. 17 centres planned to involve consumers. 15 centres had no plans to involve consumers, but only four of these considered such involvement irrelevant. Responses from investigators about the 48 individual trials were mostly positive, with respondents commenting that input from consumers had helped refine research questions, improve the quality of patient information, and make the trial more relevant to the needs of patients. CONCLUSIONS: Consumer involvement in the design and conduct of controlled trials seems to be growing and seems to be welcomed by most researchers. Such involvement seems likely to improve the relevance to consumers of the questions addressed and the results obtained in controlled trials

Additional file 1: of Consumer and community involvement in health and medical research: evaluation by online survey of Australian training workshops for researchers

Survey questions for evaluation of Australian training workshops for researchers. (DOCX 491 kb

Formalising the induction of patient and public involvement contributors on trial oversight committees

Plain English summary Clinical Trials Units are encouraged to integrate Patient and Public Involvement (PPI) into all aspects of their trials. This research explored the induction and training of PPI Contributors (e.g. patients, carers and members of the public) joining trial oversight committees. These committees regularly review trial progress and ensure participant safety. PPI Contributors sit on the committees to provide important guidance and advice on what the trial is like for a participant taking part. We looked at existing materials and research to find out what is already in use and how useful PPI Contributors felt it may be. We also held a workshop with existing PPI Contributors who had experience of participating in trials and sitting on oversight committees to find out what information they felt would be useful during the induction of a new member. Our research was used to create an induction pack for new PPI Contributors at the Medical Research Council Clinical Trials Unit at University College London (MRC CTU at UCL). We have made this resource available to all researchers and in this report we describe how it was created