Research Volunteers Forum - one year on

LOOKING BACK, LOOKING FORWARD

A little over one year on from the Research Volunteers Workshop it is time to ask what has happened since we met? How has our meeting contributed to developments around public, patient and research-participant involvement in medical research, and how has our Agenda for Action fared? This report has been prepared by the organisers of the workshop with the help of some participants and other workers in the field. We hope it will stimulate further comment and additions to supplement this account.

Impact of the Workshop

The discussions at the Workshop did not stop when the delegates went home. We have contributed in one way or another (and to varying degrees) to policy debate at international, national and regional level. Here are some examples:

  • International: TheInnovia Foundation (Amsterdam) is an international society promoting researcher / patient group collaboration. Their director, Professor Stuart Blume (a participant in the Workshop), published a news item referring to the Workshop in their Newsletter ( The same issue of the Newsletter also contained articles contributed by Dr Jill Shawe and Dr Lorena Teran, based on their presentations at the Workshop about engaging patients, participants and local communities in research. A later issue of the Newsletter featured an article from Dr Norma Morris (one of the organisers of the Workshop and a member of the Foundation) discussing the aims and themes of the Workshop (
  • National:Norma Morris was invited to discuss the HRA (Health Research Agency) strategy for public engagementinformallywith the Director, Dr Janet Wisely (who chaired one of the Break-out groups at the workshop), and subsequently to attend an Advisory Group meeting. Maggie Wilcox, also a participant in the Workshop, is a patient-advocate member of this HRA Group.
  • Regional policy: The Workshop wasnot directly involved , but may have played a contributory role in recent Research Design Service moves towards greater commitment to promoting in-depth Public and Patient Involvement with better awareness of participant issues (see examples below)
  • Access: discussions at the Workshop may also have played a contributory role in forwarding the patient group agenda for better access to trials, and better information about available trials

How has our Agenda for Action fared?

The list below highlights those conclusions and action points agreed by patient representatives, policy makers, service providers, funders, clinicians and academics taking part in the workshop where we have seen evidence of movement, though in virtually all cases work is still on-going. We would welcome further reports of progress made. (Full version of conclusions appears in the Workshop Report).

Micro-level issues

• PPI and patient groups to establish stronger relationships with research participants

• PPI groups to extend involvement to include follow through on the complete participant experience

• Challenge confidentiality rules that deny patient groups access to research participants

• Feedback to participants on research results

Macro-level issues

• Rethink the current approvals system starting from what participants/patients need

• Encourage NRES [now part of the HRA] to take further their initiatives in matters such as proportionate review, restrictions on access to participants,

• Improve system transparency

• Patient-friendly public information on available clinical trials

• Publication of information on trials having negative or inconclusive results

• Greater attention to social structural and national policy influences that could restrict patient choice

• Extending role and influence of PPI to include participants; to cover a greater proportion of clinical studies; and to take on a more strategic role

In summary we can say that: theHRA seems to be prepared to take a fresh approach in several areas, and proportionate review is now in operation. Better public information is already available; PPI groups are flourishing; other matters continue to be strongly supported in principle, but we would welcome more reports of specific achievements.

Examples of progress on the Workshop agenda

These contributions from participants and others involved in the Workshop give a flavour of the work going in furtherance of the principles and practicalities discussed at the Workshop.

From Jill Shawe:

The Margaret Pyke Research & Innovations Forum has now recruited an enthusiastic lay chair to take the forum forward. We have now set up the project with St Mungo’s and are providing sexual health care in three hostels in Camden. A forum member is on the steering group along with members of St Mungo's own user group. We had an oral presentation at the RCOG Faculty of Sexual & Reproductive Healthcare Annual Scientific meeting in Edinburgh in April to present our work and this was a joint presentation with the lay chair. We have had an abstract accepted for the INVOLVE conference in November. The forum members are involved in helping us to develop new research bids and advising on patient information for current projects.

From Louise Locock:

The Oxford BRC has agreed to support a senior coordinator for PPI in research, who will develop a network of lay research partners and ensure everyone who comes into contact with the hospital has an opportunity to say if they’d like to get involved in research, whether as participant or in more PPI ways. [For further information see] p.8 of the most recent James Lind Alliance newsletter which explains that a) we have Sophie Petit-Zeman (formerly of the Association of Medical research Charities) working with us on putting together a PPI strategy, and b) we are going to be adopting a Priority Setting Partnerships approach with the JLA, starting with orthopaedics.

From Gill Sarre:

One tangible way in which the National Institute for Health Research(NIHR) Research Design Service (RDS) for the East Midlands helps researchers to involve patients/public in research from the earliest stages is through a small grant award. At pre-protocol stages it is not easy for researchers to find resources to support consultation and involvement of patients, so we offer up to £500 for a team to develop PPI as an integral part of the design of the proposal. This might be used to run a focus group or pay expenses & catering for a consultative meeting for instance.The award removes one stumbling block from early consultation and involvement which is actively encouraged by the NIHR. A number of other RDSs offer similar awards.

New study by Healthtalkonline::

A new study on people’s experience of PPI in research, funded by the Oxford BRC, has been announced by Healthtalkonline. Click here to see the flyer for this study,

And finally

The workshop revealed a welcome synergy between the organisers’ principal objective of improving recognition of participants' contribution, partnership status and quality of their experience and the PPI (Public and Patient Involvement) groups' objective of playing a more strategic role - ie to be involved more in discussion of general policy and design questions rather than later-stage commenting on a case-by-case basis. This gives us a stronger basis for moving forward.