In this second blog from the International Conference on Health and Hepatitis Care in Substance Users (INHSU) conference, Zoe Swithenbank talks about the discussions, the food and remembering why in-person conferences are so important.
Community
This was my first INHSU, and my first face-to-face conference post pandemic, so I was a little unsure what to expect. One thing that struck me straightaway was the focus on community. As a firm believer in the importance of lived / living experience in research it was refreshing to have this as a key feature of the conference.
I attended the Early / Mid-Career Researcher event prior to the main conference, and this was delivered as a ‘speed networking’ event where academics were paired with members of the community for a two-minute chat, before moving on to the next person. Despite the usual awkward beginning, this turned out to be a great opportunity to meet different people from all over the world and share experiences. As the first session after a long, pandemic-induced break from face-to-face conferences it was a nice way to ease back in and set the tone for the rest of the conference.
Lived experience
The theme of community was evident over the next few days of the main conference, with speakers from all over the world highlighting the importance of lived experience and how this can inform research, policy and practice. A highlight for me was the Peer Research session on Thursday morning.
“…poor treatment has been normalised, and is linked to hierarchical power dynamics in which the person accessing treatment is made to feel untrusted and undignified.”
Despite being in a breakout room at the same time as some key sessions, this session was packed with standing room only. Each table had people from all backgrounds, including academics, peer-researchers, funders and practitioners, which made for some lively discussions on the role of lived / living experience in research and beyond. The discussions encompassed the challenges of recruitment, power imbalances between peers and academics and how to address these, as well as restrictive policy and frameworks within institutions and from funders which were not always compatible with the realities of peer research.
There was a general consensus that people with lived / living experience should be valued and included in a meaningful way, and that clear and open communication is an essential component. There are many challenges to be faced but seeing this type of workshop at a large international conference proved the importance of such discussions, and there was a sense of optimism about future collaboration.
Choice
When discussing lived / living experience, a key theme in many of the presentations was choice; how important it is for effective treatment and the many ways in which this is limited for people who use drugs, such as through legislation or within treatment. Wednesday’s SSA sponsored session on ‘Drug Treatment: the Need for Patient Choice’ offered three engaging and varied talks on the topic, from Thilo Beck (Arud Centres for Addiction Medicine, Switzerland), Joanne Neale (Kings College London) and Mat Southwell (European Network of People Who Use Drugs).
Thilo Beck presented the Swiss perspective with a discussion on successful treatment approaches based on informed consent and shared decision making, which are easily accessible, include minimal restrictions and no coercion. He also presented some benefits of a therapeutic approach, which include increased autonomy and sense of self-worth and the elicitation of intrinsic motivation. He summed it up with a quote:
“It’s not about the person failing the treatment, but about the treatment failing the person” (Karen Ward, Vancouver Area Network of Drug Users).
In a similar vein, Joanne Neale gave a social science perspective on opioid pharmacotherapy and choice, including a discussion on the benefits and challenges in offering choice. Potential benefits include increased treatment satisfaction, retention and medication adherence; improved patient reported outcomes; and a sense of empowerment by having more control. Associated challenges include limited resources; power imbalances; incompatible expectations and available options and regulations or legal frameworks which they operate in.
Client-centred approaches
I found Mat Southwell’s talk on the limitations of substance use services, and how prescriptive and punitive treatment can remove autonomy, increase stigma and cause harms to people accessing services particularly powerful. He argued that poor treatment has been normalised and is linked to hierarchical power dynamics in which the person accessing treatment is made to feel untrusted and undignified.
“It was great to have the opportunity to engage with and learn from so many different people, and reminded me why I love going to conferences so much.”
This is in direct contrast to the evidence base and what we know works in drug treatment: choice, a supportive, client-centred approach. I was pleased to see that these talks were very well received as they highlighted the importance of seeking and incorporating the views of people with lived / living experience in order to ensure both research and practice and appropriate, acceptable and effective.
These were just a couple of highlights of a conference where there were many, the diversity of topics and perspectives was a welcome change. It was great to have the opportunity to engage with and learn from so many different people, and reminded me why I love going to conferences so much. The carrot cake also helped… I left feeling inspired and motivated to continue my own research and to continue to push for better community and lived / living involvement in research.
The opinions expressed in this post reflect the views of the author and do not necessarily represent the opinions or official positions of the SSA or the author’s academic institution.
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