What If? Patients as Partners for Change

by David Gilbert

June 18, 2016

I have long argued for a different way to ‘involve’ patients in healthcare decision-making. I am fed up with the traditional approaches that buffer change – patients as feedback fodder or slotted into institutionally narrowed ‘representative’ roles. I have written about this here and here.

Patients can be true partners for improvement and change. They can help identify what matters, rethink problems, generate solutions, model better relationships, promote better decisions and improve practice (see, Seven things that patients bring).

Now, if we really want solutions to our current healthcare challenges, we need to:

  • Learn to value what patients can bring – see patients as partners.
  • Change how engagement is done – rethink engagement processes.
  • Support people’s capabilities to better work together – develop the right skills.
  • Develop new opportunities for patients to influence decision-making – create new roles.

The Patient Director

Becoming the first Patient Director in the NHS (there are now two of us) I have had the chance to put my money where my mouth is.

I have written about some of the excitement and challenges of the role here.

In its first year, our partnership has worked hard to get things right for and with patients. We receive referrals from GPs for patients with musculoskeletal (MSK) problems. We screen them (triage) to make sure they get to the right place at the right time and can offer people appointments in our community specialist clinics.

We got the contract for overseeing all MSK work across Brighton and Hove, Mid-Sussex and Horsham and Crawley, partly because we promised things would be truly patient-centred. This includes making sure people have choice of where to go, are supported to look after themselves and manage their own conditions better and take part in shared decision-making.

But developing systems and processes and at the same time improving and transforming services has been hard (for example moving locations, getting different clinicians to work together in different ways, integrating IT systems).

We know that waiting times for some of our services, and into secondary care are still too long. We also know that many patients are unhappy with the pre-appointment booking process.

Changing things with patients

As a patient and a carer, I’ve always been struck by the impact on patients of poor processes outside the immediate clinical encounter, particularly when it comes to access and communication. I have written about this here.

Early on, I shadowed Sally York, an excellent Extended Scope Practitioner (ESP) who now leads our physiotherapy services. We discussed ways we could improve patients’ understanding of what was said during the appointment, and how patients might come better prepared for the appointment.

Having looked at our (not very good) appointment letters, we changed the way we communicated with patients about their first appointment. This led to a new appointment letter that includes a series of questions and prompts so as to prepare for a more effective appointment. I have written about that here.

Next up was to find other ways to improve the pre-appointment process.

We had set up a Patient and Carer Forum. Each of these starts from a patient perspective. Yes, we have a patient tell their ‘story’, but patients and staff reflect on the learning and we try to come up with solutions.

At the first of these, Jenny, someone who had used our services, spoke about her own (good and bad) experiences. We got on to talking about problems with appointment systems and this aided the development of the new appointment letter. But it did more than that – it primed everyone in the room to thinking more about our systems and processes.

After the Forum, I tapped into some work going on to improve our systems and processes. We invited Jenny back to be part of this ‘systems thinking’ work that took place over several intensive days.

I was determined that Jenny (and other patients) would not just ‘feedback’ on their story – powerful though that was. Jenny and I made sure that she stayed in the room as an equal partner.

Her role was to ask the questions that brought people back to what matters to patients, to challenge professional assumptions about what was needed to address problems or about interpretations of why things were as they were, to identify other ways of doing things – in short to be an equal partner. Or, a Patient Leader (see here for articles on patient leadership, co-written by me and Mark Doughty, co-founder of the Centre for Patient Leadership).

As the workshops moved towards thinking about solutions, staff began to discuss how to change the appointment booking process. Jenny listened and then said: “Sometimes when I get your calls to make an appointment, I may be in Tesco without my diary. Or, if you fix an appointment and send a letter, it may not be convenient. Then I waste my time and I suspect yours, by ringing to change it”.

There was silence and nods around the room. Many of our Patient Care Advisers – great staff who have contact with patients on the phone and help them through the system - are on the receiving end of frustrations about the system that sometimes doesn’t work. And we get complaints and lots of cancellations or DNAs (people who do not attend) as a result. In fact, we know that about 70% of calls we get are as a result of poor processes – this is known now in the jargon as ‘failure demand’. It is a vicious cycle.

But it’s what came next that was the real surprise. Jenny said: “Why not send me a letter that asks me to phone in at a time convenient to me so as to make an appointment”.

Those around the room were immediately sceptical. What if the patient did not phone in? What if appointments were left unmade? Could we trust patients to take that responsibility? Was it an unfair expectation? Wasn’t Jenny just one patient with one ‘anecdote’? How representative of others’ views was this idea?

And yet… It might be worth a try?

The opt-in letter

Many organisations get no further than hearing the ‘Jenny story’ (some don’t even get that far).

Many staff may feel the importance of such a story and are converted to believing that the story indicates a more general problem. But they stop short of doing anything about it. Perhaps because they lack the power to do so?

Others might go a step further and identify solutions. But without patients still in the room, professional interpretations of the problem can lead to erroneous solutions. Without challenge in the room, perhaps we assume that patients don’t turn up to appointments, not because of our poor systems, but because they are feckless in some way, and need more assertive reminder letters in bold red font, or a policy that threatens to ‘discharge’ them if they don’t turn up.

Shouting always helps, doesn’t it? smiley

But, because of the way that Jenny had become a trusted member of the group, because she had been there for the whole time as a co-researcher, because the group itself had developed its own trusted relationships and really wanted to get it right, because they had delegated authority to try new things – for all these reasons, the team decided to do an ‘experiment’.

The team arranged for 100 people referred to us by GPs in Brighton and Hove with hip problems to be sent a letter asking them to phone us to arrange an appointment. The findings after a month are encouraging. 76 out of 82 patients who had a view about the process were happy with it. Cancellation rate in this cohort was 5% (compared to 14% over the last year for all Brighton hip patients). The team calculate that if a similar improvement was made throughout our service, there would be 3,542 fewer cancelled appointments each year. Staff on the phones report they like the process and feel less stress as a result.

And all because of Jenny’s gentle suggestion – “what if you tried this…”

We still need more evidence, and to know if this will work for all our populations, so we are thinking about how to roll the experiment out to other sorts of patients (e.g. with knee problems) and in different areas, for example in Crawley (where there is a high proportion of people from black and ethnic minorities).

Next up...

We now have three projects linked to our CQUIN targets (these are projects that are tied to getting extra cash from the CCG, or at least not losing it!).

In each of these – one on pain service redesign, one on shared decision-making, one on improving patients’ outcomes - we will be involving patients as partners. Those patients will be paid and supported to play a similar role to Jenny’s.

This early pool of patient partners will be bolstered by the recruitment of a further half a dozen in the autumn, so we will get a pool of about 12 patient partners by the end of the year. These people will be provided with support and training and we will identify a range of continuing improvement activities for them to be involved with.

The things that seem to make a difference in this ‘patient as partner’ approach are:

  • Meaningful, influential and well-defined opportunities for patient partners.
  • Clearly defined role that goes beyond feedback or representation.
  • Proper support (practical and administrative, reflection and learning) for patient partners.
  • Staff involved being able to change things – this is often the limiting factor in improvement projects in my opinion.
  • Directors and other decision-makers who are supportive of the changes.

And what if you tried involving patients like this?

By the way, this does not replace other involvement work. It will augment wider work, for example, surveys, focus groups, learning events, the Forum, co-designed research to get views from patients who use services.

It’s been a year since I became a Patient Director. It has taken a long time to find my feet. And god knows it has not been easy! (See, for example, this blog.) But things are becoming more exciting. It is the likes of Jenny, and the willingness of my colleagues to work with Jenny et al that make the future even more so.

If you liked this blog, read more at www.inhealthassociates.co.uk or follow David on Twitter: @DavidGilbert43.

You can also see David and fellow Patient Leader, Alison Cameron, presenting on ‘Patients as partners’ at a MES conference, Challenge 2020: Advancing Health Engagement & Involvement, on Wednesday 6 July 2016 in London.

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