Transparent Health Research – what’s in it for the public

Some personal musings on the engagement and involvement of the public and patients in the development of the Health Research Authority (HRA) Transparency Strategy from Derek C Stewart, when I was a member of the Research Transparency Strategy Group.

Common Purpose

From the outset of being asked to be involved, I felt there was a strong sense of common purpose. The idea that research studies would be easier to find and that those who take part in those trials who get to hear what happened seemed irresistible. For years, I have heard the comments – ‘I took part in a study and never heard anything more’ or ‘where can I find information about what research is going on!’.

The fact that HRA wanted what the public, patients and study participants wanted seemed like a good cause to join, a worthwhile investment of time and a tantalising possibility of success.

Beyond the Patient Representative

My role, as a member of Research Transparency Strategy Group, was about bringing some knowledge more than my patient experience. It was about understanding the practice of involving and engaging the public more than ‘being the patient voice’ at the table. This seems to be about enabling a strategic overview of process of involving more than being the patient involvement representative. I felt it was more like observing and commenting on the purpose, process and practice – the final polishing.

I think this capacity can be divided into three aspects 1) Advisory – offering guidance and oversight; 2) Networking – making connections with other knowledge of work and through the use of social media 3) Practical – suggesting workable approaches and changes;

Authenticity

From the outset I sensed a genuine interest and desire for change from HRA. I mention this specifically as it was so clearly not the tokenistic gestures which hamper both effective patient and public involvement and improvements in healthcare.

The HRA had a sound recognition of issues around recording and reporting research They understood their responsibilities and their ability to inform and influence others to bring about change. This was clearly a partnership approach from management, the Patient Public Involvement Team, Communications and across the different offices.

They already had ideas, plans and had started work with partner organisations. This included the different nations, it was more than just London, there was a social media campaign, Local Patient Group. It was linked to other similar events and groups like AMRC and ABPI.

Public Expectation

One of the key drivers was the realisation that things need to change. There are so many more people taking part in research studies, it is becoming a greater part of the standard patient journey and the public has a greater expectation on receiving information. These are assisted by the increasing use of smart phones, tablets and other digital technology.

In many respects, this experience reminds me that this is about improving the patient experience. It is about having a clear understanding of what needs to be improved, changed or developed. Patient & Public Involvement can be a surrogate to ensure that all those who need to be involved have the opportunity; a reminder to have a rich mixed variety of opportunities for people to have their say; to work with partner organisations and groups; and to have plans which are appropriate and proportionate to the task.

Leadership

Another important strand, for me, in the way we meaningfully involve and engage the public, patients and carers is the value of capable leadership. In this case the joint leads of an executive and non-executive director demonstrated the Board’s commitment and were unified in the direction of travel.

By leadership, I mean working with people, having open conversations, checking and rechecking the assumptions, ideas and proposals. This was an enquiry-based approach, the various events rolled on from each other with alterations being made, text being amended as each conversation progressed.

It is about taking the decision to be transparent about transparency by publishing the minutes of the meetings. This may invite external criticism to our discussions, processes and suggested proposals but actually that’s what leadership is about.

Learning

On reflection as I think about the involvement as a whole, I appreciate the greater potential we have to be levers for change rather than solely the representative on a committee or working together. It is as much about challenging the nature of exclusion rather than becoming tied up trying to include everyone. It is about advocating for a wide variety of opportunities to engage and involve people in decision making.

It was fundamentally about clarity of purpose, a joint authentic endeavour and inclusive leadership to

  • Make transparency easy 
  • Make transparency the norm 
  • Make information public.

Finally

All of this is brought into sharp relief because of Covid-19. Research is in the public eye in a way that it has never been before. It is under greater internal and external scrutiny. By having such a number of ways to open the dialogue we are better able to understand the process and regulation of research and address fake news.

I believe that the HRA has become more known and more in touch with people as part of this process. I think it realised that as a regulator it really appreciated the willingness of people to help create, develop and make change happen.

I certainly found out more about health research, the role of a regulatory body and policy development.

Andrew George has written about how this is more than a relationship for the BMJ

Andrew George: Consent is only possible in a relationship

Thank you, Juliet, Andrew, Nicola, Teagan, Helen, Jim and Naho – apologies if I have forgotten anyone

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