2018 activities

It’s that time of year when we all start to reflect on our 2018 activities, and plan for the year ahead. Research4Me is no different.

If I had to sum up 2018, its been another year of listening and learning from all corners of our community, from the patients, carers and consumer representatives who have shared their questions, insights and stories with us, to those working in health and medical research, trying to figure out their way forward to improve recruitment to and public involvement in their research. I’ve run events, spoken at conferences, participated in working groups and consultations, advocated for consumer representation at conferences, all in the hope of trying to solve issues that matter to patients around clinical trials and research, help encourage the patient voice into the clinical research process and make it easier for medical researchers to engage with the community.

2018 Reflections

What Research4Me has achieved this year has only been possible because of our community. There are over 70 in our facebook group now, and over 1500 people (combined) following us via our newsletter and various social media channels. I am truly grateful for the many that have a participated in our events, facebook community and internal and external projects, provided me with advice or a sounding board for ideas, and helped share Research4Me’s content. Though Research4Me has not grown as fast as I would have like, I am excited by how engaged those that have connected have been. Every one of you holds a special place in Research4Me’s journey, and I thank you for your support.

I am truly inspired by what many of you do every day in advocating for your causes, participating and contributing to research, committees, events and more, sharing your stories, supporting others like you, often whilst experiencing your own health, caring or research challenges. You are why we exist. We hope in 2019 our platforms and opportunities can help more of you to connect with each other to help advance, together, the medical treatments of tomorrow.

2018 has seen the momentum around consumer engagement in health and medical research build, and this will no doubt continue given the Medical Research Future Fund (MRFF) listed Consumer-Driven Research as one of the 12 Priorities for 2018-2020. But, there is still alot of talk and not alot of investment in building the consumer workforce that will be needed to support the medical research endeavours of tomorrow. I believe this investment now critical to ensure the MRFF, NHMRC, industry growth centre and pharma/medtech investment in health and medical research, especially clinical trials, achieves maximum benefit for patients with minimal financial waste. Patients and carers are waiting for answers. Researchers are waiting for recruits and consumer partners. Funders want to make sure their research dollars are wisely invested. We have to be able to find a way forward on this, and I hope Research4Me can be part of the solution.

Much has been done this year by various groups, including the Australian Clinical Trials Alliance (ACTA) surveys, and the Australian Health Research Alliance (AHRA) partners surveys, to understand what is happening overseas, and locally in Australia around consumer involvement in health and medical research, including barriers and enablers. But in 2019, its time to move from talk to action.

On a personal note, I have been on quite the rollercoaster this year. I lost two dear family members, and had family caring responsibilities absorb time away from Research4Me. While this is difficult, it is a stark reminder that life happens and we have to cherish and embrace the time we have to enjoy our loved ones, pursue our passions and make a difference.  Trying to balance being a wife, mother, daughter, with the passion I have for the work that I do probably ties me in knots most days. So I have to recognise my family for supporting my efforts on all fronts. It has been a hard year, and while I have never questioned the need for Research4Me, I have questioned whether there is a business model that can support it. I guess 2019 will reveal that.

A couple of weeks ago I sat and brainstormed all the things I would like Research4Me to do in 2019. It became a very long list. So as has been my philosophy since the inception of Research4Me, I will be looking to our community to help shape which of these activities Research4Me moves forward with. Early in the new year I will set about establishing Research4Me’s advisory board, education committee and consumer advisory panel and providing a platform for people to pledge their intention to move from talk to action in this area in 2019. I will also be launching a partnership program for like minded individuals and organisations interested in leveraging each others activities to build the community and resources needed for greater consumer involvement in research. Can you imagine how quickly we could create an informed, engaged, connected community, learning from and helping each other to improve research if we just combined our efforts?

I invite you to keep in touch with all our activities through our various social media channels and newsletter, and look forward to what we can achieve together in 2019. As always, I welcome your questions and input into what we are doing.

If 2018 is anything to go by, 2019 will be another busy year for everyone. So take some time to rest and enjoy those you care about in the coming days, as I plan to do.

Finally, along with my heartful thanks for the support this year, I send all my hopes and wishes for you and those you care about to have a safe and happy holiday season, and good health throughout 2019.

 

Janelle Bowden

Research4Me Founder

 

 

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