Publication - Publication

An Investigative Review into the process of establishing, managing and supporting Independent Reviews in Scotland

Published: 26 Oct 2018
Part of:
Health and social care
ISBN:
9781787813342

An Investigative Review into the process of establishing, managing and supporting Independent Reviews in Scotland, with particular reference to the Independent Review of Transvaginal Mesh.

137 page PDF

1.0 MB

137 page PDF

1.0 MB

Contents
An Investigative Review into the process of establishing, managing and supporting Independent Reviews in Scotland
Chapter 5: Selection and composition of members of a review

137 page PDF

1.0 MB

Chapter 5: Selection and composition of members of a review

Selection of panel members

133. There is no obligation to appoint panel members to a review, but if such appointments are made they raise similar questions to that of the chair, namely; selection process, composition, responsibility and independence.

134. Recent Scottish examples show there is scope for a varied approach towards composition. For example, The Independent Advisory Group on the Use of Biometric Data in Scotland comprised ten members,[78] The Hate Crime Legislation Review, nine members,[79] The Commission on Women Offenders, three members.[80]

135. The predominant consideration should be the requirements of the review. What skills and experiences are required for it to be able to fulfil its remit?

The Mesh Review

136. The Final Report of the Mesh Review lists 26 members.[81] In response to a parliamentary question[82] concerning terms of reference, membership and criteria for membership for the Mesh review, Alex Neil, the then Cabinet Secretary for Health and Wellbeing who commissioned the Mesh Review, responded as follows:[83]

“Membership of the group is reviewed periodically, and additional members invited to attend when necessary. This is to ensure the appropriate level of expertise and range of opinion is represented. The composition of the group has been developed to represent all interested parties, including:

  • One chairperson (retired public health consultant);
  • Two patients who have experienced complications;
  • Two patients who have experienced a positive outcome;
  • Four clinicians with a special interest in urogynaecology practicing in Scotland;
  • One public health consultant;
  • One researcher;
  • Three professional bodies;
  • Three Scottish Government officials (two clinicians and one policy officer);
  • One medicines and healthcare products regulatory agency official.

Members attending periodically:

  • One physiotherapist;
  • Two clinicians (unique device identifier project lead);
  • One Scottish Government public health consultant.

Members to be confirmed:

  • One pain management consultant;
  • One general practitioner;
  • One clinician with a special interest in urogynaecology;
  • One Information Services Division consultant in public health.”

137. Compared to the approach taken in other reviews, this seems an unusually large core number which would have been difficult and unwieldy to control for an experienced chair. This would have been more challenging for someone who had not previously undertaken the role of chair in a Scottish Government review.

138. Based on the member list contained in the Final Report, the additional clinicians who were to attend periodically were not appointed.[84] Four clinicians were listed and one of these had resigned by the time the Final Report was published. There were also no pain management or general practitioner appointments.

139. In terms of patient representatives, the requirement for (a) two patients who had experienced complications and (b) two who had experienced good outcomes were initially met. However, one of the patient representatives with a positive clinical experience of mesh only attended the first meeting and was not replaced. This gave rise to many concerns about patient representation being unbalanced. This was never remedied.

140. The petitioners did not regard themselves as being part of the collective of patient representatives. Instead they saw themselves both as petitioners and as representatives of the Scottish Mesh Survivors Group.[85]

141. Earlier reference has been made to the Short Life Working Group which had been in existence since 2013.[86] An Expert Group evolved from this and held its first meeting in February 2014. It was generally agreed that the work of the group had been very positively received. Some who were members of that group became part of the Mesh Review Group, including the patient representative with a good outcome and the petitioners.

142. One member who became a member of both believed that this was a “sensible” approach. Another member’s perception was that the main difference between the Expert Group and the Mesh Review Group was “a change of chair”. A few of the Group continued their membership with both the Expert Group and the Mesh Review.

143. The Expert Group agreed to suspend its work whilst the Review was being conducted, although some members told us that, occasionally, update meetings were held on the same day that the Mesh Review meetings were held.

144. One member commented that they felt people “volunteered” to be part of the Mesh Review group from the Expert Group rather than being selected, observing “it was a kind of internal nomination … but I don’t exactly know the process.”

145. Others were invited to become members of the Mesh Review because they represented organisations which may have had an interest or expertise in the subject.[87] It was recognized that the pool from which to draw expert representation was not a large one:

“All of us have had some involvement in something at some point on a national level because there aren’t that many of us.”

146. Finally, additional members were proposed. This seemed to arise due to dissatisfaction with the composition of the membership of the Review. These additional suggestions were an attempt to bring what has been described as “balance” to the Mesh Review Group, usually following a request from an existing member. One such example references the petitioners advocating for the inclusion of a surgeon from the USA. His inclusion was ultimately deemed unsuitable. However this resulted in an additional clinician co-opted into the Mesh Review Group.

147. Members were asked if they were provided with any guidance on how the Mesh Review Group or any comparable group should operate, and how they could best fulfil their role as a member of such a review group. They all said that they had not received any form of guidance. The majority felt that drafting guidance for members of reviews would be beneficial and may mitigate some of the issues the Mesh Review Group experienced.

“I would have welcomed this. It’s quite a formidable thing to be asked to sit on something like that.”

148. Members of the Mesh Review appear to have been recruited by various means. A few participants reference the Scottish Government as being the main force in the selection and appointment of the group members. However there appears to be disagreement as to who specifically had responsibility for the selection of members. Some members were initially contacted by telephone; others by email.

149. Despite a list detailing the proposed membership of the Review having been presented to Parliament, this was not adhered to. This was especially evident in the patient representation where there were two individuals – the petitioners – who had experienced adverse outcomes and saw their specific duty as representing the organisation to which they belonged and to uphold their submission to the Public Petitions Committee. Viewed in this way, the patient representation criteria were not fulfilled at all.

150. It seems clear that the composition of the panel was reached in a largely arbitrary manner. This may be due to the fact that there is no ‘standard’ approach for the selection and appointment of group members in Ministerial reviews. An initial membership seemed to evolve from a pre-existing Expert Group, professional representation was invited and then additions were made to appease some dissatisfaction with the composition of the group. Apart from one member, the first chair appeared to have no direct role in the selection or appointment of members of the Review. There was also a misunderstanding in terms of the representation of those who attended as patients.

We recommend that guidelines should be developed detailing the procedure which is required to establish an independent review. These guidelines should be in a form which can be modified and standardised over time. We believe that the more widely used they become, the more accepted they become.

We recommend that the process for the selection of members should be as independent of the subject or area under review, as possible. We recommend that criteria should exist to determine the composition and balance of review members in relation to the subject matter under review.

We recommend that the chair should be the first appointment and that members should be either selected by the chair or in consultation or approved by the chair.

We recommend that the degree of external control of a review may also have to be considered within the – sometimes competing – interests of constraints on time and costs. The process for evaluation and selection should be transparent and accountable and if possible, undertaken by someone outwith the area or subject being reviewed.

Composition of members of a review

Special interest or third sector representation

151. Special interest or third sector representation is recognized as a unique resource and distinct from professional or clinical skills and input.[88]

152. We explored what members thought about having ‘special interests’ representatives as part of the Group. We have defined ‘special interests’ as persons with direct involvement, for example, patient representatives on a health related review or victim representatives on a criminal justice related review.

153. One of the biggest decisions to be taken in the composition of a panel is whether those who have been directly affected by the subject under review should be core members of a group and/ or whether there should be ‘third sector’ representation.

154. For example, in the Mesh Review, this could have been someone from an organisation representing patient interests, but having no direct, personal experience of the subject matter themselves.

155. The benefits of having this type of composition may include bringing balance to discussions but it has been suggested that such representation should depend on the nature and needs of the particular investigation.[89]

156. When asked, the majority of members were enthusiastic about the idea of having a representation from a third sector organization.

“They would need to have an understanding of the level of literature, etc. but they also need to be able to work with individuals who are not from that area but would put special time aside to help them go through the materials but not have a vested interest. Be totally outside it. Ask them what their views are and reflect with them.”

“Without a shadow of a doubt, I think there needs to be lay representation. And I think that there should be lay representation to reflect the opinions of both groups.”

157. Some members had experience of having third sector representation in other reviews and found this beneficial.

The Petitioners as members of the Mesh Review

158. A few members believed that the petitioners “had” to be included in the Review, one commented that the “petitioners being at the heart of the process” gave it “power”. Another felt that the results of the report would have “issues of legitimacy” if the petitioners had not been part of the process.

159. Others commented on feeling that the petitioners had an undue weight within the group feeling that “the process was for them and dictated by them”.

160. Some members recognized that the petitioners were representing not only their own experiences but those of the organization to which they belonged; the Scottish Mesh Survivors. Others believed that the petitioners viewed the Review Group’s function as a means to “find evidence that would lead to the banning of mesh.”

161. Everyone we spoke to held the petitioners in high regard and acknowledged their significant efforts in getting the topic higher levels of media and political exposure, and fostering discussion on the topic.

“They have got the whole system changed for documentation, they have got a whole new consent system, they’ve got doctors sitting and listening, they’ve got the GP’s listening. There are marvellous things that have come out because of what they have done… If you look at the success that they have achieved through campaign, it’s wonderful.”

162. The work the petitioners conducted as part of the Expert Working Group in terms of changes to information leaflets and doctor/patient dialogue was also commended. Some feared such positive impact had been reduced or “lost because the focus moved to the outcome of the[Mesh] Review and the tensions that surrounded it.”

163. Another member acknowledged her difficulty in trying to reconcile personal emotion, the Review process and wider government and public interests:

“You have women who are understandably really angry about their lives and their life projection … When you have the Government interests, and all of these are antagonistic to one another and it’s raw and it’s hard and then you have an academic process to go through as well. So not only have you got emotions that have to be cut short…but you have a process that has to be written about in a particular format which is alien to empathy and understanding of how someone would naturally access information.”

Direct patient involvement

164. There was less consensus on whether the inclusion of patients directly affected by the topic under discussion was a usual or appropriate arrangement. Some members stated a preference for hearing evidence from patients via subgroups.

“I think seeing the patient groups as part of a sub-committee that then reported back, but reported back appropriately, was probably the way to go forward, because there was quite a lot of stalling [in] my experience in those meetings that prevented the meetings being as effective as they could have been. That’s not to say they weren’t effective, but they could have been more effective.”

165. Others felt that direct patient involvement was necessary and valuable. Some participants questioned the likelihood of not involving patients directly in high level governance groups due to concerns such an omission may affect the legitimacy of the group itself, and any subsequent reporting.

“Not at all. I think the fact that they were full and active and listened to members, and I talk about all three of them here, of that committee was absolutely vital to the function of that committee.”

166. Others noted that it depended on what “type” of review it was and what process what adopted.

“No. I think you would have taken evidence from them. You would ask them to come and speak to you, wouldn’t you? But it wasn’t really set up as a take evidence type of Review. It was really set up as a clinical type of Review, that’s what lured me into thinking that’s what its purpose was. Look what evidence is out there, decide how you are going to make recommendations from that and put it into a document.”

167. We found this insightful because clearly this member was not alone in their perception that this was a “clinical” review. We believe that such a discussion as to what type of review it was did not take place and consequently, this may have had a bearing on how members regarded and interpreted the evidence.

168. We believe that it is a question of the nature and requirements of a review as to whether there should be representation from patients who have been personally involved. The terms of reference and remit should provide direction in the composition of a review. Patients as mirrors of perception or experience can contribute a powerful voice, and their membership may not only provide experience but insight and legitimacy.[90]

169. In a health related review, the degree of involvement that a patient representative will have, should be taken into consideration in preparation of background materials and ongoing support.[91]

We recommend that an evaluation of the merits of having special interest representation in a review should be guided by the nature and requirements of the review.

We recommend that alternative approaches be considered in whether it is more appropriate to have this representation as part of a sub group with an effective spokesperson to feedback discussion to the core group.

170. Whilst other members appeared to be more familiar with the direct patient involvement approach, this was most apparent in those who worked with or for the NHS. [92] However, it was noted that any such increased patient participation was usually accompanied by training and support.


Contact

Email: David Bishop