Both patient and staff surveys show strongly positive results to PatientView. Both believe that it is giving them more involvement in their care and that this helps them to get things right. Clinicians report improvement in patients’ understanding and a rise in the ‘level’ of consultations. It is inexpensive and nowhere has reported that it has increased overall work. No IT system has failed to be able to interface with PV so far. So how many patients could benefit?
Recruitment rates vary widely even between renal units where it has been installed for a long time. This cannot be fully explained by age, social deprivation, or lack of English as first language, as there are high-recruiting units in which each of these factors is prominent. So here are some observations and ideas. They have come in particular from work in Salford, led by Grahame Wood, and Edinburgh.
- The commonest reason for not joining is not knowing Amazingly, this is true even in units with the highest participation. Sometimes patients have heard of it, but don’t realise that it could be useful to them.
- More than half of patients can become users We don’t know the ‘ceiling’ of usage, but usage is over 50% of RRT patients in many units and this continues to rise.
- Up to 40% of patients share their logins – and quite a large proportion of these are dependent on someone else to log in for them, but still value the service. So the follow-up to ‘but I don’t have/use a computer’ should be “Do you have a relative or friend who could log in for you?” (or “who would want to see your results?”)
- The difference in median age between users and non users is only 3y Internet use has risen remarkably and continues to rise. We think this age difference is dropping.
- Other surprising observations on users – Dialysis patients are the heaviest users, although transplant patients are more likely to join. We have been unable to identlfy any differences at all between men and women. However fewer patients from deprived postcodes join. But are we as assiduous about asking them?
- Some patients who join don’t become regular users – but it has been shown that a demo can reduce this figure substantially. This has led us to design shorter reminder flyers and online resources to help explain (see below), but we’re doing some research to understand this better.
- Personal recommendation remains the most effective tool. Recommendation by medical staff may be particularly effective, but a successful project in Edinburgh involved school students. Patient advocates in clinics should work well. Advocates need leaflets, sign-up forms, and a laptop/tablet to give a demo. If you get the ‘I don’t have/use computers’ (especially common from retired white men), ask about relatives, friends (and here is a patient’s recommendation).
- Posters, leaflets – make them unmissable. On the desk when patients go to make a repeat appointment, in packs with info for patients approaching ESRF, put reminder flyers in with copies of letters, or appointment cards. (Some units have made some smaller flyers in addition to the regular blue leaflets.) See foot of page for where to get these, or use our templates to make your own.
- Make it easy to join – a few words of recommendation to support the leaflet, and a very simple way to join, so that it is easy for the patient to join and for you to ask. Publishing a phone number, email address, and ready availability of forms are all helpful. Could you paste a variant of Edinburgh’s joining page www.edren.org/rpv onto your Trust’s webpage? The PatientView website has a I want to join button which sends a message to a local admin.
- Respond quickly to joining requests. You can appoint as many RPV administrators as you want to help spread the burden. A few minutes of training will be enough to learn the joining protocol*, and they can be anyone who has access to your renal IT system – consultants, nurses, secretaries.
- Run a recruitment campaign using all these hints. While you’re doing this, make sure you inform all your staff too. You’ll find out many of them have forgotten about it, or don’t know what to do if a patient asks. Try to get info included in induction materials, do a presentation or two to staff about patient feedback and your local uptake figures* and progress.
- Just ask! Ask patients again, and whether they have found it useful, or have any problems. You can point them to leaflets or the info (including YouTube videos) at help.patientview.org/patientview2/howto if they have had any problems.
* More info about these in our guide for local admins