A Note From CODE: We are pleased to welcome Anji Kingman, Clinical Outcomes Facilitator, to the blog. Anji has worked in healthcare for over 30 years, in the South East of England, the North West and now the North East where she has worked for Northumbria Healthcare NHS Foundation Trust for 14 years. With a combination of clinical and administrative experience and a Microsoft Office Master qualification, she has been developing and running the trust’s orthopaedic PROMs programme for 3 years.
Patient-Reported Outcome (PRO) programs have two main goals: collect as much data as possible and put the data to use.
Anji Kingman, Clinical Outcomes Facilitator at Northumbria Healthcare – NHS Foundation Trust, is responsible for helping her organization meet both goals. It’s her job to manage Northumbria’s PRO program, which spans 5 hospital sites, includes 24 participating surgeons, and sees approximately 10,000 elective orthopaedic procedures annually, 2,336 from which she successfully collected PROMs. Anji’s role includes everything from making sure patients complete their PROM, scoring and inputting data (most PROs are completed on pen & paper), creating reports, educating her team, and helping design the future state of the PROM program at Northumbria.
I had the opportunity to interview Anji about what it’s like to manage a patient-reported outcomes program. We cover everything from collection process and capture rate, to the exciting ways Northumbria is using PRO data.
What follows is a lightly edited transcript of our conversation. Short on time? Here are five quick takeaways:
- Northumbria is part of NHS and collects PROs from a wide range of orthopaedic procedures. Last year, they successfully collected PROMs for 2,336 patients and the numbers are growing each year. Patients take their questionnaires in the surgical day unit before surgery. Surveys are predominately administered via pen/paper – but they are working on introducing digital collection methods as well.
- Anji credits much of her program’s success to her team. Everyone at Northumbria, from nurses to surgeons and administrators know PRO data is important and support the program.
- Surgeon engagement has a very positive correlation with patient engagement. When providers tell the patient about the PRO or use it in clinic, patients are more likely to take the survey. Anji has regular meetings with providers and hospital staff to check in on the program and find opportunities for improvement.
- Patients like the ability to leave comments on their questionnaire.
- Northumbria puts PRO data to use in many ways. If patient improvement seems cause for concern, the surgeon is notified. All comments from patients are shared with surgeons. Surgeons analyze the PROMs to ensure they are using the best methods and equipment and make changes if appropriate. PROMs are also used for audit internally and outside the trust.
Author’s Note: I stumbled upon Anji (@Outcomes_PROMS) by scrolling through one of my favorite hashtags on twitter: #PROMs. Her twitter handle obviously piqued my interest, but it was the genuine and infectious love for her job and teammates on display that really motivated me to learn more.
Anji’s generously shares insights about the outcomes program she manages and even uses twitter to spark conversations around best practices from the community at large. Follow Anji on twitter: @Outcomes_PROMS
Further, in the middle of the interview, we realized the U.K. and U.S. have different names for common roles. Here’s a quick reference guide in case you need it:
Consultant: Surgeon holding the highest appointment in a particular branch of surgery in a hospital
Medical Secretaries: Medical secretaries cover a consultant’s admin requirements e.g handling questions from patients, staff and consultants, organising his diary, booking meetings, managing a waiting list of patients,updating patient records and dealing with confidential information, typing letters, clinical reports, etc.
Porter: Hospital employee who moves equipment or patients. In my case, they deal with my post!
Ward Clerks: Person who provides general administrative, clerical, and support services for a surgical ward
Commissioners: Services are commissioned by CCGs (Clinical Commissioning Groups) and NHS England on a local, regional and national basis. They are involved in deciding how public healthcare funds are spent.
Ellen Laux: Anji welcome to the CODE Blog. To get us started, what does it mean to be a Clinical Outcomes Facilitator at NHS? How many people are on your team?
Anji Kingman: This was a brand new role when I began so it has involved starting from nothing, determining what was wanted, setting up and embedding systems, and creating our PROMs programme. It has grown and evolved beyond our expectations and we are constantly adapting and improving what we do.
As of the beginning of this year I have a part-time assistant who is proving a great asset so we are now a team of two in the outcomes office. Of course, there are many more people involved in the work though! We have a fantastic, supportive clinical director Professor/Surgeon Mike Reed, as well as all of the consultants (surgeons) who really drive the programme. We have ward clerks and nursing staff in the surgical units who ensure patients receive forms before they have their surgery, in addition we have support from the medical secretaries, I.T. team, porters, physiotherapists, and management. Being such a large organisation with 4 main hospitals we really could not make it work without great teamwork.
Ellen: Can you take me through a typical day?
Anji: There is no such thing as a typical day; every day, every week, is different and that’s part of what I love about the role. Every day there are completed forms incoming which need to be recorded and filed as well as scores to be calculated, and post-op forms to be sent out. I have regular meetings with each of the clinical leads, our orthopaedic clinical director and our operational service manager. I enjoy analysing our outcomes and creating charts, preparing information or slides for meetings, and assisting consultants, fellows, registrars and medical students with audits.
As our programme continues to expand and evolve, we are always looking for ways to improve and keep up to date with current issues of interest or importance to the surgeons and specialties. I attend meetings and conferences which I find both interesting and educational. Occasionally I give a presentation or talk to share some of what I’ve learned and what we do.
In addition to all of the day-to-day work, we are working on an exciting new project: a PROMs database that will record and analyse all of our outcomes across all specialties. We have been very lucky to have help from Code4Health, a part of NHS Digital and have an amazing team working with us. Our hope is that once ready, we can offer this to other NHS hospitals to use internally for their own PROMs programmes.
I love that my role is very varied and exciting. I work with brilliant people and get to work on something about which I am passionate – so every day feels new, unpredictable and exciting.
To give you an idea of where I spend my time each month I would say it averages out to:
5% 1-1 meetings
35% calculating and recording incoming PROMs
15% sending out follow-up forms
10% working on audits/reports
30% development and software project
5% group meetings (MDT, case discussions etc.)
Ellen: We love to hear that. An engaged passionate team has such a positive impact on PRO programs. On average, how many PROMs does Northumbria collect a year?
Anji: Some patient populations have PROMs collected directly by the NHS, for instance for our 2,700 primary hip and knee replacements. These are administered centrally by NHS Digital.
In addition, in the last year at Northumbria we have collected our own PROMs for a further 2,336 patients undergoing other orthopaedic procedures and our numbers grow each year as we include more procedures to the programme.
Patients are asked to complete post-op scores at 6-months or a year, depending on the surgery they had, and for some procedures we also follow-up annually.
Ellen: What measures do you collect & for what patient populations? Do you collect Patient Experience PROMs and Complication PROMs along with functional and global health PROMs?
Anji: We collect general health (EQ-5D) and one or more of 30 condition specific PROMs for patients undergoing orthopaedic surgery including: foot, ankle, shoulder, elbow, wrist, hand, finger, spine, hip and knee, as well as bone and joint infections. We serve a population of ½ million across a large geographical area so our patients cover a range of ages and health states.
Additionally, we ask patients if they had any complications after their surgery, whether they would recommend the hospital to family/friends if they needed the same procedure, and likewise if they’d recommend the surgeon. We ask if they are satisfied with the outcome of their surgery and we ask if they are back at work after surgery (if they were previously working).
Separately, Northumbria has a patient experience team that randomly distributes PREMs (Patient-Reported Experience Measures). Last year the team collected 7,726 PREMS, over 1,000 of which were from orthopaedic patients.
Ellen: Wow. That’s so much data! What’s your process for collecting PROMs?
Anji: Currently we collect all our pre-op PROMs on paper forms, completed by the patient on the day of surgery. We are working towards a system where we can offer patients the option of using tablets in hospital, or completing questionnaires via their own PC or smartphone. Some patients do complete post-op questionnaires electronically, but the majority seem to prefer paper forms.
Ellen: Okay, so switching modes to reflection. In the way that you are currently collecting, what do you think your team/org does really well? Similarly, how do you do think the program could improve?
Anji: Our biggest strength, I think, is the commitment to collecting and learning from PROMs and great teamwork across the trust.
Our pre-op collection rate is extremely high thanks to the help of the fantastic staff in the surgical units at our 5 hospitals where the surgery is performed. All of our forms are accessible via our intranet and can be downloaded and printed as needed and given to patients when they arrive in the units on the day of surgery.
Like most organisations that collect PROMs, our post-op collection rate needs work, though this is largely a matter of resources. Currently we find it is around 50-60% on paper (and only 30% electronically) but we are unable to remind patients which would potentially improve this rate. We do however have very engaged consultants (surgeons). We’ve found those who ask patients to complete post-op forms in clinic and/or discuss PROMs during consultations and clinic letters have nearer 75% return rates.
Ellen: Can you talk about how your program has evolved in the 3 years since you started in your role?
Anji: Really, when I started my role was a brand new role that didn’t exist 3 years ago. It has grown from scratch into a fairly large programme in just 3 years, which is a very short space of time.
We initially tried several different ways of collecting pre-op PROMs. Everything from collecting them in clinic or by mail, as well as on the day of surgery. We’ve now settled on day of surgery as the best method for us. We started doing just foot-and-ankle, upper limb and non-arthroplasty hip, but other orthopaedic specialties have been included now which means a lot of work but it is very satisfying. Now, other departments are showing an interest too and this tells me we are going in the right direction.
Ellen: We work with so many people in a similar role as you. Can you share some lessons learned about how you get providers/staff engaged?
Anji: When I started, I was fortunate to be working with a team of consultants who were the drivers behind it all, so this has never been an issue. However, I have made a point of ensuring that I know what data they need and then building around that to deliver something meaningful, and accessible.
I respect the huge demands on their time and have tried to set up the system so that there is as little extra work for them to do as possible, particularly in theatres and clinics. Most of all, I maintain communication and we have regular catch-up meetings to ensure things stay on track. It took a little longer to communicate what we were doing and its importance to clinic, theatre and ward staff, though again I have tried not to create anything too burdensome for them and appreciate the help they provide.
Ellen: Same question for patients. How do you position the survey to them so they know it is important to complete?
Anji: It is easiest to engage patients when they are asked to take part by clinicians and many of our consultants mention it to them in clinic and in subsequent letters to the general practitioners (of which most patients choose to receive a copy).
We have also found that including the opportunity to add comments helps patients feel the questionnaires are worth completing and not just a tick-box exercise.
Ellen: Okay, so this is a big one. What are you doing with all the data you’re collecting? How are you using the PRO data? Do you share the data? If so, how? With patients? Providers? The population at large?
Anji: I can’t speak for the entire NHS but here at Northumbria Healthcare we use the data in various ways:
First and foremost, everything we do is for the benefit of the patients so if there are any concerns about a patient’s post-op scores we advise their consultant who knows their patient best and can decide whether any action needs to be taken (such as an earlier review appointment.) In addition, we always pass on any comments made by the patients including thanks, compliments, concerns, questions or even just suggestions.
At local level, consultants and teams regularly audit their PROMs and use the information to ensure that they are using the best methods and equipment and make changes if appropriate. Consultants and teams also use the data for education, presentations and papers within and outside the trust, regionally and nationally. For these, the PROMs are anonymised.
Various professional and national bodies as well as those commissioning the service require PROMs data for validation and educational purposes, and our programme ensures we can provide this information, although patient identifiable outcomes are only shared where patients explicitly consent (in writing) for this. Otherwise only anonymised data are shared.
In the future, we would like to share our outcomes more widely so that patients and commissioners can see how we are performing as an aid to making the choice to use our services. We already do this for hip and knee replacement.
Ellen: Wow. I love how hands on you are about making sure the data is used too. I actually couldn’t have asked for a better segway. What are some tip(s) you would share with people like you, doing the collecting of PROMs, for a successful program?
Anji: Ah. Yes, thank you. I love every aspect of my job. To answer your question, communication, education, and willingness to adapt are absolutely essential. We never dreamed our PROMs programme would grow so large or so quickly and we have endeavoured to continually improve. Clinician engagement is the key ingredient to success so learn about their work and their goals, and then work with them to find ways to provide what they need.
Likewise, never forget that this is not data collection for the sake of it, but for the ultimate benefit of patients so remember that they also need data to feel meaningful and the process needs to be easy for them to participate.
Ellen: Final question. Who do you think is doing really cool things with PROMs?
Anji: ICHOM is working hard to define international outcomes tools in order that knowledge can be shared on a global scale which is really great work.
OpenEHR teams have begun to write archetypes to facilitate the creation of interoperable PROMs software which is very exciting.
There are now many people and organisations starting to realise the potential of PROMs and investing resources accordingly. I do feel there is a lack of knowledge about what others are doing and it tends to be incidental discussions at conferences or use of social media that shows us there are others out there as passionately engaged as we are. If there were a central hub of communication for PROMs that would be perfect, but in the meantime a lot of great work with PROMs is probably flying under the radar.
Ellen: Thank you so much for all your time. It has been truly a pleasure talking with you.
Anji: Thank you so much for asking me!