Patient support groups - management software

[Hutan]

I've become involved with a regional patient support group. A very good nurse was employed about 6 months ago whose part-time role includes visiting members to give them advice and help them access services. Currently all our systems are very rudimentary and predominantly paper based, with some unlinked spreadsheets. We have a need to keep better records and protect members' privacy.

Very fortunately, we've just located a person with ME with talents in customer relation management among other things who may be able to put some time to this. And so developing a simple customer relation management system is a real possibility. It might even allow us, with the right ethical/privacy safeguards in place, to provide data for investigations into the illness course of people diagnosed with ME/CFS.

Have any of you already gone down the same path of attempting to develop systems for member records? What things worked and what things were problems?

 

[Daisybell]

I’m just getting to grips with a database system called Infoodle. It seems to be used mostly by schools and churches but I think it’s probably quite good for smallish organisations... not too expensive in terms of ongoing costs. Is it something that there will be funding for?

 

[Trish]

Is there a way that only the nurse, and possibly the patient, can access the records about them? I would be wary of letting a fellow patient who is setting up a system like this having access to other patients' records. It's different when it's a practice manager in a medical practice because confidentiality is presumably built into their employment contracts.

I'm sure you're on top of this @Hutan, I'm thinking more of other patient groups using volunteers in this way.

 

[Hutan]

I'm sure you're on top of this

Ha, we are just at the beginning.

Thanks @Daisybell for the recommendation of Infoodle.

Ideally, the government would provide the patient support service and the nurse would have systems and oversight to support and supervise her. It is really difficult in a small organisation with limited funds. That's why I'm keen on the idea of local patient support groups for different but similar-ish diseases banding together for economies of scale, as the MS Waikato group does, offering support for MS, ME/CFS and Huntington's. But we have what we have for the moment, which is a part-time nurse and a committee of people mostly with very limited energy.

(To be clear, our nurse doesn't have the title of Community Nurse and isn't providing overt medical advice. She's well aware of her professional responsibilities. She would talk about pacing, but if she noticed a medical issue needing attention, she would recommend the member see their doctor.)

With respect to the patient interactions, we do need to provide some professional oversight while not having the committee poking around in records that should be private . So perhaps we need to pay a senior nurse with relevant experience (eg a community nurse from the MS society) to meet with our nurse quarterly and review a random selection of records in the system. I expect that there still needs to be a tech person managing the system who has access to the records as the need arises.

And perhaps periodically we could have a survey of members which could, among other things, help us pick up if there was any issue with the service the nurse provides.

Another thought is that professional oversight and regular support of community facilitators is something that could be provided by the national organisation (in our case ANZMES). This would be made much easier if they were all using the same software platform.

With respect to funding, we are a small group but we do have a good amount of funds in the bank and a good level of success in obtaining grant funding.