I love being a patient advocate, I get a great sense of achievement and satisfaction out of it. Sometimes if I’m going through a difficult patch, it’s the thing that gives me enough motivation to get out of bed in the morning.
The good experiences I have had doing this role far outweigh the negative ones. There have been many occasions I have questioned what I am doing, does it really matter? on occasion I’ve gotten a message out of the blue from another patient or family member who said what I’m doing is making a difference
Those acknowledgments fill me back up again with a sense of purpose. As a patient, I had many of my ambitions from before I became ill taken away from me by becoming a stage 4 cancer patient. Having a sense of purpose is extremely important, it keeps me afloat on the sea of uncertainty surrounding me.
I understand that this role isn’t for every patient. I totally get how difficult it is just to deal with cancer or any other chronic illness. People who do decide to go beyond being a patient and get involved in trying to improve all the other stuff that affects our outcomes as patients, aren’t HEROES!! We are just trying to keep ourselves afloat too. Some people might even consider us a bit bonkers, for even trying. It is very much each individual patient’s own idea how to negotiate their illness in the way that suits them best.
In the last year I became aware of a new buzz acronym, or at least it was new to me PPI, Public Patient Involvement. Many patient advocates that have been tirelessly working away trying to influence change with numerous years, might argue that this is what they have always been doing. Only now there is a fancy name for it. Of course there is a lot of truth to that and they deserve great credit for getting involved when it was much more difficult pre social media era to have your voice heard.
PPI though from my understanding aims to move things on to the next step. This is total involvement of patient reps from the outset. This is public, patient or carers suggesting and influencing what the shape of future research should be. Being incorporated as an integral cog in the wheel. This is a huge shift for academia but will also be a huge shift for the patients with experience who want to get involved at this level. This is a re-shaping in many ways of what are the defined roles in research. We are talking about the patients knowledge and experience being of equal status to that of all the other interested parties on what research grant money should be spent on.
Of course this is, in my opinion, a fantastic opportunity. Seeing research shift from what’s important to the academic community, to what’s important to improving patients lives in our case. It’s difficult to believe that this hasn’t always been the focus so far, but there are many factors at play as to why a research project would get funded previously other than improved patient outcomes. There’s historically been a lot of research for the sake of research and replication of projects, that never went anywhere except a filing cabinet.
But and there’s always a But, can patients realistically afford to become involved at this level. Firstly they will need a certain level of knowledge, so some training will be required to get you up to speed on the whole process. There will be the time expected of patients to participate in focus groups, steering committees, phone calls, answering emails, travelling to meetings, reviewing grant applications. Research projects can be notoriously slow to get up and running so it might require a long-term commitment. We also need to be realistic about what these research projects can fundamentally expect in terms of really changing a system, and how quickly that would happen after the project is finished and submitted.
So let’s get to the nub of it!!
At present we don’t have sufficient numbers of patient reps or carers at this level of understanding. Pressure is growing on the research community to have PPI on all new projects. I have heard recently this demand is delaying grant funding because there just isn’t enough members of the public engaged in this process yet. Certainly a hunger is there, but even as an experienced patient rep, I sometimes find myself wondering how exactly to get involved instead of just hearing presentations telling me about PPI and what it means. We need better direction and linking up of interested parties.
I’ve been involved with patient advocacy almost three years, I know the barriers we face to involving ourselves. At the moment these are largely voluntary roles, can it continue to be so. The patient reps or carers time is as valuable as any other person sitting around a discussion table. In fact, they are the ones, that have the experience of living with the condition, being researched, BUT, they are the only ones not paid for their participation. Yesterday I saw a presentation by Prof Agnes Higgins from Trinity College Dublin, at a Health Research Board of Ireland PPI conference, she asked was it fair to continue to remunerate patients with tea and biscuits while everyone else is paid for their time and expertise.
One third of the participants at the conference were patient reps or carers, we were there largely at our own expense, because we choose to be, the other two-thirds were without doubt there in some capacity relating to their employment. I spoke to many of the patient reps and we all had similar experience, I could only travel to Galway and to the many other similar conferences and meetings I attend to draw attention to problems facing Irish Melanoma patients, because I have a free travel pass. A good friend who lives nearby gave me somewhere to stay the night before, and arranged to collect me from the station and a lift to the conference early next morning. Without this support I could not have attended. Travel, hotels, taxis, food it all adds up so I have had to become very selective about what I can or can’t attend. On occasion, if I think it’s worth me attending, I will fund it myself.
This was the same story repeated to me by other patient reps, and carers, attending the conference. Some, were even sofa surfing to be there. Can we really expect patient reps and carers to carry the extra financial burden of PPI engagement, with no guarantees remember of any improvement in the cause their passionate about. Like I stated earlier we are not HEROES, we do this because we see the faults, we want change, we want everyone to have an equal opportunity to survive and thrive.
Is anyone considering the commitment, these people who may be dealing with a chronic debilitating illness, or life limiting illness like me, or perhaps, every day caring for a family member, with little respite, are willingly making at the moment. Some say, we can’t be paid, because it will make us biased on our opinion of the project, I find that completely insulting, as do others. Nobody questions the other parties involved like this, they declare any previous funding and they are good to go. Why don’t the same principles apply to patient rep or carer. Why isn’t our integrity trusted in the same way. If we are going to really value the commitment of the patient voice in research, does a cup of tea and biscuits really seem fair for their expertise, time and efforts to be involved?